Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Hello Kathy, How wonderful for you that you have found something that has helped you reclaim your life. Congratulations!!!!! I have ME/CFS also and was hoping LDN would help me too, but I reacted very severely to the tablets. How disabled were you before taking the LDN? How long had you had ME before taking the LDN? You said it took some time for you to notice the benefits. Can you give me an idea of how long that was? Sorry for all the questions!!! Here's some more Did you get your Naltrexone with the lactose filler from the LDN website? Is it just pure naltrexone and lactose? Any other fillers? What dose are you taking, and did you have to work up to it? Would you be prepared to sell me 2-3 of your capsules if I cover all your costs, postage etc. ?? This way I could try them and see if I can tolerate the compounded LDN capsules. I was unable to tolerate the Naltrexone tablets which have fillers and colour. Lactose may be a problem for me as I am intolerant of dairy, but if Dr. Bihari says you have to have lactose, then I'm willing to try them. I'm willing to try anything and everything to get my life back. I know you understand. Let me know what you think. You can contact me direct at atranceformer @ .com (spaces in there so it comes out readable in the email). Thanks for your help. Warm regards, Jan > > Hello my friends, > > I read all the posts and I want to tell you my experience with ldn. > I went to all the dr in my area and nobody would perscribe it for > me, but being a nurse I knew ldn was the way to go with ms so I > became dr bihari's patient so I could get it. First let me tell you > that dr bihari only uses lactose filler with the ldn he said > anything else the ldn will not work. He also told me that it has to > be taken between 9pm and 3am to work well. He told me all my > symptoms would lessen by 80% and they did. I have been on ldn now > for two years and in my belief it is the best medication for us. I > found it takes time for us to see results depending on the amount of > damage we have and I had alot of damage to my brain, we have to be > patient. the first thing I noticed was all the numbness was gone. My > balance and walking impoved and my head felt normal in time. I feel > like a normal person again. Probably if I quit smoking I would see > more improvement so going to try to quit and see if that helps. He > also said if you have allergies or get a cold which I haven't had > since taken ldn the symptoms come back while you are ill and they > did when I have an allergy attack which I know is temporary. He also > said while taking ldn which I will never go without you will have no > cancer which to me is a real plus. I am walking and still working > partime but you also have to help yourself by working the muscles to > your level and then go alittle more. Its a mircle pill but you have > to help it achieve the level you want by physical activity and a > positive attitude. Just want to tell you my experience with LDN. > > > Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Hello Jan, I would be very happy to answer your questions,before taking ldn I could barely walk and had no balance, vision was poor to, my head felt like my brain was swelling and always motion in my head,my neuro wanted me to consider a wheelchair for saftey but I refused. I was a nurse so went to find sometihng so did alot of research. Thats how I came upon the ldn, the drugs they use for Ms are immune suppressers why would I want to do that so I contacted Dr Bihari since he discovered it and had to become his patient because no dr in my area would perscribe it because it wasn't on the list for ms. I have had ms now for 35yrs and these last 2yrs have been great. I would say in about a couple of weeks I noticed I had no numbness anymore and then I discovered I was walking better and the balance was getting better the only issue I really have now is extreme fatigue so have to rest between doing things. You have to get the naltrexone compounded so you have to find a compounding pharmacy, my pharmacy contacted dr bihari and my pills are compounded exactly as they should be. you said you took pills wondering what pills I only know of the ones for addicts. because that is what it is used for. I am taking 4.5mg of naltrexone compounded with lactose filler. this is the dose I have always been on. Dr Bihari said even lactose intolerant people wouldn't have a problem with that it is so very low.not sure what website you are talking about that sells naltrexone. I am not sure what you are dealing with what is me and cfs. best regards Kathy >From: " atranceformer " <atranceformer@...> >Reply-low dose naltrexone >low dose naltrexone >Subject: [low dose naltrexone] Re: LDN and ME Kathy >Date: Thu, 21 Oct 2004 09:06:34 -0000 > > >Hello Kathy, > >How wonderful for you that you have found something that has helped >you reclaim your life. Congratulations!!!!! > >I have ME/CFS also and was hoping LDN would help me too, but I >reacted very severely to the tablets. > >How disabled were you before taking the LDN? > >How long had you had ME before taking the LDN? > >You said it took some time for you to notice the benefits. Can you >give me an idea of how long that was? > >Sorry for all the questions!!! Here's some more > >Did you get your Naltrexone with the lactose filler from the LDN >website? Is it just pure naltrexone and lactose? Any other fillers? > >What dose are you taking, and did you have to work up to it? > >Would you be prepared to sell me 2-3 of your capsules if I cover all >your costs, postage etc. ?? This way I could try them and see if I >can tolerate the compounded LDN capsules. I was unable to tolerate >the Naltrexone tablets which have fillers and colour. Lactose may >be a problem for me as I am intolerant of dairy, but if Dr. Bihari >says you have to have lactose, then I'm willing to try them. I'm >willing to try anything and everything to get my life back. I know >you understand. Let me know what you think. You can contact me >direct at atranceformer @ .com (spaces in there so it comes >out readable in the email). > >Thanks for your help. > >Warm regards, Jan > > > > > > > Hello my friends, > > > > I read all the posts and I want to tell you my experience with >ldn. > > I went to all the dr in my area and nobody would perscribe it for > > me, but being a nurse I knew ldn was the way to go with ms so I > > became dr bihari's patient so I could get it. First let me tell >you > > that dr bihari only uses lactose filler with the ldn he said > > anything else the ldn will not work. He also told me that it has >to > > be taken between 9pm and 3am to work well. He told me all my > > symptoms would lessen by 80% and they did. I have been on ldn now > > for two years and in my belief it is the best medication for us. I > > found it takes time for us to see results depending on the amount >of > > damage we have and I had alot of damage to my brain, we have to be > > patient. the first thing I noticed was all the numbness was gone. >My > > balance and walking impoved and my head felt normal in time. I >feel > > like a normal person again. Probably if I quit smoking I would see > > more improvement so going to try to quit and see if that helps. He > > also said if you have allergies or get a cold which I haven't had > > since taken ldn the symptoms come back while you are ill and they > > did when I have an allergy attack which I know is temporary. He >also > > said while taking ldn which I will never go without you will have >no > > cancer which to me is a real plus. I am walking and still working > > partime but you also have to help yourself by working the muscles >to > > your level and then go alittle more. Its a mircle pill but you >have > > to help it achieve the level you want by physical activity and a > > positive attitude. Just want to tell you my experience with LDN. > > > > > > Kathy > > > _________________________________________________________________ FREE pop-up blocking with the new MSN Toolbar – get it now! http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
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