Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 ahhhh, makes sense. Wonder if there would be a way to get more folks to check in. [low dose naltrexone] Re: Side Effects of LDN >> Numbers dont lie, I would think those percentages would be important for LDN's future. I would love to see the percentage of folks who have had symptom relief, either major or minor, and the percentage of people that have had their progression either stopped or slowed down. I know Skip was/is doing a study/poll, but since Gluck posted that back in 03, a lot of folks have started LDN, including many abroad. I wonder if there would be a way to put those percentages together.=========The two-thirds comes from the LDN website and from Dr. Bihari's personal patients only. Only Bihari's personal patients have been tallied. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Bernadette, This is certainly true, BUT leaving them in contributes to a daily exposure. See,http://www.patsullivan.com/blog/files/HaleyMedicalVeritas05.pdf#se arch='blaxill%2C%20mercury%20vapors' There is a specific protocol for removal of amalgam fillings and a suggested supplement routine. Removal haphazardly can leave one very sick. In US, the organization which can help with safe removal is called DAMS; some info @ http://www.dams.cc/ I don't know if there is an international equivalent. Within the last 4 years I've had the mercury taken out of my mouth. Just reading to assist my child made me realize what a toxic hot bed I had brewing in my mouth. Like anything else, you need to read and evaluate the info that you find. If I was at risk for/experiencing motor neuron disease this would be a priority for me. However, the intervention can't stop there as one needs to also take a positive course of action to remove the stored heavy metals which chronic exposure has caused. Most of them get packed away, wreck havoc in our bodies and do not excrete without positive assistance. That's one reason that the hair test is of such value. It's relatively inexpensive and can give you good feedback that testing blood, urine, stool, spinal fluid will not offer on this metal issue. Blessings, > > Hi Bernadette > > > > Rory started on 3.5mg for the first month and then increased the > dose to > > 4mg. He has been taking LDN since July. We are happy with LDN > > in that there is no side effects. > > > > Initial changes on LDN for Rory was that he thought it helped his > balance, > > improved strength and lessened the tiredness on his legs in the > > early morning, he looks great, he is in good form and has no > > negative attitude towards the disease as yet. > > > > He finds the condition very frustrating in that his tiredness is > constant, > > if he does too much one day he will be able to do little the > > next day. He has dis-improved in strength and walking.Twitching > > is increased in his shoulders and he suffers badly with cramps, > > which are more so in his unaffected leg. > > > > Maybe the disease has progressed or he has been doing too much. He > rests a > > little bit more now, more a case of been forced to rather than > > taking it easy. He is restricted though walking and lifting any > > weight, stairs and steps are an issue, he has to be careful of > > falling as he descends steps. > > > > Rory was on 2 Rilutek a day, he stopped for a week and noted the > stiffness > > in his legs has eased. He is now back to 1/day and then will go > > to nil to assess if this is a real effect. > > > > I have faith in LDN, I just hope that Rory will start to hold his > own from > > here on in and that the 'evil disease' inside him will be > > slowed down > > > > http://news.bbc.co.uk/2/hi/health/6054572.stm > > > > This could be the start of clinical proof at last and speed up much > needed > > research for MND/ALS > > > > Ethel > > > > > > > > > > > > Send instant messages to your online friends > http://uk.messenger. > > > > > > > > Send instant messages to your online friends http://uk.messenger. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Hi Aletha, I've been doing a few searches (not easy as % is treated as a special character and can't be searched on in a search on the group, not even using " % " with the quotes) and it would seem my figures were incorrect. As one other kind person pointed out to me and my searches confirmed those figures probably came from that German study where they took the LDN in the morning - in that study about 30% of people showed symptom improvement. Also found the results of a very small informal poll Maureen (Gazorpa) ran ages ago on weight loss and symptom improvement and ignoring the weight loss aspect 15 of the 20 people who responded had some symptom improvement, which is basically in line with what Dr. Bihari says. Therefore, it would seem I don't need to play down the chances of actual improvement as much as I have been doing. :-) Aletha Wittmann wrote: >Hi , > >I don't remember hearing only 30 to 40% before your comment. > >Aletha > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 Dearest , You are correct that the study completed by the German's was not a good representative study as they gave the med in the mornings. They wanted to monitor the reactions of the people taking it and I guess that was easier to do in the mornings. Everyone was upset about the study because it was not given at the right time frame and missed the whole point. But non the less they got 30% at the wrong time, and that is about what you get from the crabs. For other polls see Sammy Jo's site, she had 2 separate polls taken http://www.ldners.org/SJW_LDN.pdf#search='LDN%20MS' Also, The LDN Research Trust site from England that is trying to get testing done, and they had taken an extensive poll. http://www.ldnresearchtrust.org Please let me know what your findings are. My best Aletha Re: [low dose naltrexone] Re: Side Effects of LDN > Hi Aletha, > > I've been doing a few searches (not easy as % is treated as a special > character and can't be searched on in a search on the group, not even > using " % " with the quotes) and it would seem my figures were incorrect. > As one other kind person pointed out to me and my searches confirmed > those figures probably came from that German study where they took the > LDN in the morning - in that study about 30% of people showed symptom > improvement. > > Also found the results of a very small informal poll Maureen (Gazorpa) > ran ages ago on weight loss and symptom improvement and ignoring the > weight loss aspect 15 of the 20 people who responded had some symptom > improvement, which is basically in line with what Dr. Bihari says. > Therefore, it would seem I don't need to play down the chances of > actual improvement as much as I have been doing. :-) > > > > Aletha Wittmann wrote: > >>Hi , >> >>I don't remember hearing only 30 to 40% before your comment. >> >>Aletha >> >> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 I started at 3mg on March 17, 2007 and went up to 4.5. I waited too long to order my next supply and since I had a few 3mg left over, I took those while the 4.5 arrived. Well, when I went back to 4.5 I felt some of the muscle spasms come back but now I can curl my big toe (right foot) so I have mixed results. I am planning on staying on the 4.5mg being so new to LDN and see how it goes. I do have an observation to make: Before having MS, I use to sweat like the average person. After being diagnosed with MS but before LDN, I had noticed that I really did not sweat. When out in the sun, I barely felt my body moist and I live in Florida! Now on LDN, I am sweating again and my body is cooling off. Anyone noticed the same? IvySee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 > > I haven't posted in awhile. I started 3 mg LDN in early November 2006 > and was doing great. My spasms significantly decreased. my urinary > urgency decreased and I was able to lower my Baclofen from 130 mg/day > to 80-100/day. Since I was advised I could increase and should, I > gradually went up to 3.5 with increased spasms and then to 4. After a > few days on 4, I had uncontrollable leg spasms along with nausea and > awful headaches. I went to the website and saw that it had been added > that those MS patients who had prior spasticity problems should not go > above 3. I stopped altogether for a couple days to help clear up the > nausea and headaches and then began back on 3. They both continue to > exsist. Has anyone had this problem? What can I do? I love what LDN > has done up to this point and want to continue. I didn't have these > side effects until increasing to 4 and because my regular doctor was > against LDN in the first place, I don't feel like I can ask. Any > suggestions here would be really appreciated. > > Thanks. Dorene > ============ What pharmacy do you get your LDN capules made? What is the filler used in the capsule? Do they use pure naltrexone powder or do they crush the 50mg naltrexone capsule. All important things to know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 Hi Dorene, I get my LDN also from Skip. As far as I know the regular filler he uses is Avicel. Arjan -----Original Message----- From: low dose naltrexone [mailto:low dose naltrexone ]On Behalf Of Dorene Sent: Monday, June 11, 2007 12:53 PM low dose naltrexone Subject: [low dose naltrexone] Re: side effects of LDN I get my LDN filled through Skips Pharmacy. To be honest, I don't know what the filler is. I have gotten it through there since I began in November and just started having problems when I increased the dose. Any info would be appreciated. Dorene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 Hi Ivy, about 2 years ago MR people were taking about their sweating habits with LDN. Something is happening and it is good that you can sweat. I was just talking to one of our members about living in a hot climate with MS. MS'rs are known for having problems with the heat. Obviously being able to sweat is an important part of being able to cool yourself off. I am glad you noticed this. Aletha Re: [low dose naltrexone] Re: side effects of LDN I started at 3mg on March 17, 2007 and went up to 4.5. I waited too long to order my next supply and since I had a few 3mg left over, I took those while the 4.5 arrived. Well, when I went back to 4.5 I felt some of the muscle spasms come back but now I can curl my big toe (right foot) so I have mixed results. I am planning on staying on the 4.5mg being so new to LDN and see how it goes. I do have an observation to make: Before having MS, I use to sweat like the average person. After being diagnosed with MS but before LDN, I had noticed that I really did not sweat. When out in the sun, I barely felt my body moist and I live in Florida! Now on LDN, I am sweating again and my body is cooling off. Anyone noticed the same? Ivy See what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2007 Report Share Posted June 13, 2007 Chad, Welcome! Do you have MS? I was just wondering if you'd share your age, type of MS (if that's what you have) and a little bit about your journey up to now. Not being nosy - just interested. Glad you found LDN and that you're getting along well with it so far! Beach Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2007 Report Share Posted June 13, 2007 Hi Beach, Yes, I have MS, I just posted a timeline from 1996 to present. For the record, I'm 36 years old, I don't think I mentioned that in my post, LOL Night, Chad zippy47710@... > [low dose naltrexone] Re: side effects of LDN > >Chad, >Welcome! Do you have MS? I was just wondering if you'd share >your age, type of MS (if that's what you have) and a little bit >about your journey up to now. Not being nosy - just interested. >Glad you found LDN and that you're getting along well with it so >>far! >Beach > Quote Link to comment Share on other sites More sharing options...
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