Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Mike, I had fwd the post about LDN to my neuro. Her reply is below. Note that she only has one patient on it. I have one patient with ALS trying it, but it has not done anything for this patient. I don’t think it is worth the expense Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2004 Report Share Posted March 4, 2004 , When your neuro says " it has not done anything for this patient " what exactly does she mean? Does she mean that the patient didn't improve or that they continue to decline? Whilst some people with MS have experienced significant improvements the key thing is that in a very high percentage of cases it stops them getting worse. Almost everybody with the form of MS in which they suffer attacks (or exacerbations) has suffered none since they started LDN over periods of time in which they would normally have had at least one. If a new patented drug somebody could make big bucks from had results half as good as that the medical world would be jumping through hoops. Her reference to " the expense " also makes me wonder as someone else did about what sort of dosage she has prescribed. My capsules are costing me well under $2 per day here in Oz and from what I have read in the lowdosenaltrexone group it is even cheaper over there. I don't think anybody in their wildest dreams could call that expensive given the potential benefits. If she thinks it's expensive it sounds like she may have prescribed 50mg per day which is the dosage for the original purpose of naltrexone which was treating drug addiction. However, the whole thing about using naltrexone for boosting/regulating the immune system is that it is LOW DOSE naltrexone i.e. only 3.0 to 4.5 mg per day. Also, making up the capsules requires a special sort of pharmacist because of the minute dosages involved and there are quite a few documented cases where even these special pharmacists don't all get it correct. There are people who continued to get worse after starting LDN but when they used LDN from places known to make it up accurately they then did have positive results. There has recently been discussion on lowdosenaltrexone group of a case of someone with MS getting considerably worse while on LDN. However, it turned out that they were still using drugs - a big no-no with LDN. That indicates a complete lack of research by them and their doctor. IMHO it is imperative that anybody considering using LDN go to www.lowdosenaltrexone.org and read everything and then bite the bullet and join the lowdosenaltrexone group (same thing as PLS-FRIENDS) and read all the postings to get a good feel for what it's all about. It's painful in a way because there are at least as many postings as on PLS-FRIENDS, but given the ignorance of most neuros and GPs when it comes to LDN you owe it to yourselves to learn all you can about it. Here endeth today's lesson............ lkgentner@... wrote: > Mike, > > I had fwd the post about LDN to my neuro. Her reply is below. Note > that she > only has one patient on it. > > > > I have one patient with ALS trying it, but it has not done anything > for this > patient. I don’t think it is worth the expense > -- . ,-._|\ Covington / Oz \ \_,--.x/ v Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2004 Report Share Posted March 7, 2004 Hi all - I went to my neuro and brought the LDN website info with me. She had no problem with me trying it - but, also did not put much stock in it helping. Unfortunately I started LDN at the same time as Elavil (for toe pain), Clonodine Patch (for spastiscity) and Lutimax. I did not feel well - so we decided to start with intoducing one new drug at a time. I will try LDN again in a few weeks. But my neuro was open to it at least. I will keep you posted when I do start again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2004 Report Share Posted March 7, 2004 Hi Donna, He's right - there is no research but that's because it is not a patented drug now and this 'new' use at low doses does not justify any company spending money researching/running controlled tests on it because they can't get exclusive rights to make and market naltrexone. Many people are finding that their neuros won't prescribe it but their GPs are more likely to. If worst comes to worst there has been information given in the lowdosenaltrexone group on how to arrange a phone consultation with a known LDN friendly doctor. Most doctors who are unfamiliar with it but are open minded enough to prescribe it after reading all the information people print off from www.lowdosenaltrexone.org soon become converts once they see the results. The following is a reply to someone today who had a similar problem and I think it covers things quite well. As I said in my original reply, I think anybody considering using LDN should join the lowdosenaltrexone group on Yahoo and get a good feel for a) how people are going on it and the sorts of problems you are likely to run into trying to get a prescription and how to beat them. ----- REPLY ------ Print off information from the LDN site. Tell your doctor that you understand that it is just anecdotal evidence, but it *has* received enough attention to warrant a trial in those with Crohn's disease. Remind them that it has virtually no side effects, and assure them that you will remain compliant with your other regimens. Try to approach it as a " team " decision between the two of you. If they reamin unwilling, politely inquire about the rationale behind their decision. If they are not willing to at least give it a try; I would seriously consider finding another physician who is more willing to work *with* you. Hope that helps. ---- END REPLY ----- Cheers, rosestone3 wrote: > I ask my neuro about it and he said there was no research backing > it. Even in a low dose he would not give it to me. > Donna > > > > > > Mike, > > > > > > I had fwd the post about LDN to my neuro. Her reply is below. > Note > > > that she > > > only has one patient on it. > > > > > > > > > > > > I have one patient with ALS trying it, but it has not done > anything > > > for this > > > patient. I don’t think it is worth the expense > > > > > -- > > . > > ,-._|\ Covington > > / Oz \ > > \_,--.x/ > > v > > > * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2004 Report Share Posted March 7, 2004 Hmmm, just read what I wrote and didn't make it clear that reply I quoted from the lowdosenaltrexone group wasn't mine to take any credit for........ C wrote: >The following is a reply to someone today who had a similar problem and >I think it covers things quite well. > >----- REPLY ------ > >Print off information from the LDN site. Tell your doctor that you >understand that it is just anecdotal evidence, but it *has* received >enough attention to warrant a trial in those with Crohn's disease. >Remind them that it has virtually no side effects, and assure them >that you will remain compliant with your other regimens. Try to >approach it as a " team " decision between the two of you. If they >reamin unwilling, politely inquire about the rationale behind their >decision. If they are not willing to at least give it a try; I >would seriously consider finding another physician who is more >willing to work *with* you. Hope that helps. > >---- END REPLY ----- > > Quote Link to comment Share on other sites More sharing options...
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