Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 Stavros, I believe you can ask Skip's pharmacy directly about what to do to preserve LDN in that awful heat. Good luck with your treatment. It is not as hot in my community, and I keep my LDN in an air conditioned room. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 Welcome to the LDN group, Stavros. I do hope LDN helps you. And as one of many MS sufferers who never reacted well to interferon, you might consider changing your MS medication to Copaxone -- the only non-interferon drug, which I had no reaction against myself, after going downhill for 2 yrs on Avonex then 6 weeks on Betaseron (when my body never had a chance to recover from the effects of the interferon shot). I had no reaction to Copaxone at all, the only drug that is recommended for treatment with LDN -- no interferon therapy is. Rae in Michigan From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of stsolakosSent: Thursday, June 23, 2005 3:40 AMlow dose naltrexone Subject: [low dose naltrexone] LDN capsules maintainance Hello everybody.This is my first post to this group. Let me introduce myself.My name is Stavros, I live in Greece, I am male 25 years old diagnosedwith MS in 2001, but I have had symptoms since I was 17 and, perhaps,even younger. I am sorry if my English is bad, but it is not my nativelanguage. Please feel free to correct me.I have recently started LDN, after 4 and a half years in Rebif, amedicine that I currently hate. I obtained it from Skip's Pharmacy,which is said to be reliable and experienced with LDN. I got 1.5mgcapsules with avicil filler and I take 2 every evening at 22:30.During the first few nights I felt that something was going on a fewhours after taking LDN. I also had had some difficulty sleeping. Now Idon't feel anything, however I have many dreams, which I didn't havebefore. I did never have dreams. Once a month maybe.My MS symptoms are stable, some days a little better, some days alittle worse, but I was wondering whether my LDN is spoilt. I have hadno new symptoms since starting it and I already walk better. We havehot summer here in Greece (34-36 degrees Celsius), so I put LDN in thefridge (about 7 Celsius). Is it wrong? Did this spoil my LDN? Should Iexpect a fast recovery from my symptoms (which are not very disabling,anyway), or it could take months to feel something?Thank you very much for your support. You have a wonderful group here.Stavros Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 Your English is excellent. [low dose naltrexone] LDN capsules maintainance > Hello everybody. > > This is my first post to this group. Let me introduce myself. > > My name is Stavros, I live in Greece, I am male 25 years old diagnosed > with MS in 2001, but I have had symptoms since I was 17 and, perhaps, > even younger. I am sorry if my English is bad, but it is not my native > language. Please feel free to correct me. > > I have recently started LDN, after 4 and a half years in Rebif, a > medicine that I currently hate. I obtained it from Skip's Pharmacy, > which is said to be reliable and experienced with LDN. I got 1.5mg > capsules with avicil filler and I take 2 every evening at 22:30. > > During the first few nights I felt that something was going on a few > hours after taking LDN. I also had had some difficulty sleeping. Now I > don't feel anything, however I have many dreams, which I didn't have > before. I did never have dreams. Once a month maybe. > > My MS symptoms are stable, some days a little better, some days a > little worse, but I was wondering whether my LDN is spoilt. I have had > no new symptoms since starting it and I already walk better. We have > hot summer here in Greece (34-36 degrees Celsius), so I put LDN in the > fridge (about 7 Celsius). Is it wrong? Did this spoil my LDN? Should I > expect a fast recovery from my symptoms (which are not very disabling, > anyway), or it could take months to feel something? > > Thank you very much for your support. You have a wonderful group here. > > Stavros > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 Hi Stavros, I don't know about the refrigeration. Someone will answer that. I think that your English is very good. There is no need to apologize. The hope for LDN is to stop the progression. Some people get relief from symptoms. I have heard that dreams early on are normal, but should go away. Since you are feeling good and noticing some benefits, I would continue to take the product. More relief may come!! Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 Stavros, Your LDN is not spoiled. It is quite common to have disturbed sleep for a week or so. It is also quite common to have vivid dreams. There may or may not be noticeable improvements when starting LDN. Keep in mind that LDN stops progression so you may not notice anything...that is OK...it is still working. Bet wishes, Tom [low dose naltrexone] LDN capsules maintainance > Hello everybody. > > This is my first post to this group. Let me introduce myself. > > My name is Stavros, I live in Greece, I am male 25 years old diagnosed > with MS in 2001, but I have had symptoms since I was 17 and, perhaps, > even younger. I am sorry if my English is bad, but it is not my native > language. Please feel free to correct me. > > I have recently started LDN, after 4 and a half years in Rebif, a > medicine that I currently hate. I obtained it from Skip's Pharmacy, > which is said to be reliable and experienced with LDN. I got 1.5mg > capsules with avicil filler and I take 2 every evening at 22:30. > > During the first few nights I felt that something was going on a few > hours after taking LDN. I also had had some difficulty sleeping. Now I > don't feel anything, however I have many dreams, which I didn't have > before. I did never have dreams. Once a month maybe. > > My MS symptoms are stable, some days a little better, some days a > little worse, but I was wondering whether my LDN is spoilt. I have had > no new symptoms since starting it and I already walk better. We have > hot summer here in Greece (34-36 degrees Celsius), so I put LDN in the > fridge (about 7 Celsius). Is it wrong? Did this spoil my LDN? Should I > expect a fast recovery from my symptoms (which are not very disabling, > anyway), or it could take months to feel something? > > Thank you very much for your support. You have a wonderful group here. > > Stavros > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 > Hello everybody. > > This is my first post to this group. Let me introduce myself. > > My name is Stavros, I live in Greece, I am male 25 years old diagnosed > with MS in 2001, but I have had symptoms since I was 17 and, perhaps, > even younger. I am sorry if my English is bad, but it is not my native > language. Please feel free to correct me. > > I have recently started LDN, after 4 and a half years in Rebif, a > medicine that I currently hate. I obtained it from Skip's Pharmacy, > which is said to be reliable and experienced with LDN. I got 1.5mg > capsules with avicil filler and I take 2 every evening at 22:30. > > During the first few nights I felt that something was going on a few > hours after taking LDN. I also had had some difficulty sleeping. Now I > don't feel anything, however I have many dreams, which I didn't have > before. I did never have dreams. Once a month maybe. > > My MS symptoms are stable, some days a little better, some days a > little worse, but I was wondering whether my LDN is spoilt. I have had > no new symptoms since starting it and I already walk better. We have > hot summer here in Greece (34-36 degrees Celsius), so I put LDN in the > fridge (about 7 Celsius). Is it wrong? Did this spoil my LDN? Should I > expect a fast recovery from my symptoms (which are not very disabling, > anyway), or it could take months to feel something? > > Thank you very much for your support. You have a wonderful group here. > > Stavros ========= Stavros, Dr. Lawrence from the UK who has MS himself and uses LDN explains these things. When starting this LDN(Low Dose Naltrexone) therapy in the treatment of MS, there may also be some initial transient, though temporary, increase in MS symptoms. Experience in using this method has demonstrated most commonly, such as disturbed sleep, occasionally with vivid, bizarre and disturbing dreams, tiredness, fatigue, spasm and pain. These increased symptoms would not normally be expected to last more than seven to ten days. Rarely, other transient symptoms have included more severe pain and spasm, headache, diarrhea or vomiting. These additional symptoms would appear to be associated with the previous frequent use of strong analgesics, which effectively create an addiction and dependency, thus increasing the body's sensitivity to pain. This temporary increase in symptoms may also perhaps be explained when we consider the manner in which this drug is expected to work. Initially, MS occurs due to a reduction in the activity of the controlling influence of the suppressor T-cells within the immune system. During an acute relapse, the overall number of T-cells is reduced, the normal balance of helper T-cells and suppressor T-cells is disrupted and the damaging helper (CD-4) T-cells tend to predominate. This is the situation most pronounced during an acute relapse but occurs similarly, but to a lesser extent, in chronic progressive MS. Under the influence of LDN there will be an expected increase in the overall numbers of T-cells but, because the CD-4, helper T-cells tend to predominate at this time, an increase in their numbers will expectedly tend to increase MS symptoms. It is only when the numbers of suppressor T-cells effectively & quot;catch up & quot; that the normal balance is restored and symptoms once again diminish and improve. In addition, because LDN stimulates the immune system and many of the drugs routinely used by the NHS in the treatment of MS further suppress the immune system, LDN cannot be used in company with steroids, beta interferon, methotrexate, azathioprine or mitozantrone or any other immune suppressant drug. If there is any doubt, please submit a full list of the drugs you are presently taking so that their compatibility may be assessed. In addition, because LDN will also block the analgesic effects of any opiate drugs (includes codeine, dihydrocodeine, morphine, pethidine or diamorphine) presently being taken, the use of LDN will initially greatly increase the level of pain experienced. It is therefore advisable that any opiate-like drugs be discontinued at least two weeks before this treatment is initiated. When starting the treatment it is essential that any untoward or adverse side-effects are reported immediately so that the treatment process can be further assessed and, if necessary, modified. Dr. M R Lawrence Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 Hi .. if you cannot keep the LDN at room temperature it is best you store it in the fridge. Better too cold than too hot (I know this because I discussed it with Irmats) So, what you are doing is right, the refrigeration will not ruin it. As for Copaxone .. my husband decided to come off Avonex and go LDN alone .. if he progressed his plan was to start copaxone. Nearly 3 years later .. he has not progessed so has not started copaxone. Dr Bihari does not recommend Copaxone with LDN but says if the patient would like to take copaxone with LDN well they can because it will not work against LDN. Would Dr B himself take Copaxone with LDN if he had MS .. no. All the Best > Hello everybody. > > This is my first post to this group. Let me introduce myself. > > My name is Stavros, I live in Greece, I am male 25 years old diagnosed > with MS in 2001, but I have had symptoms since I was 17 and, perhaps, > even younger. I am sorry if my English is bad, but it is not my native > language. Please feel free to correct me. > > I have recently started LDN, after 4 and a half years in Rebif, a > medicine that I currently hate. I obtained it from Skip's Pharmacy, > which is said to be reliable and experienced with LDN. I got 1.5mg > capsules with avicil filler and I take 2 every evening at 22:30. > > During the first few nights I felt that something was going on a few > hours after taking LDN. I also had had some difficulty sleeping. Now I > don't feel anything, however I have many dreams, which I didn't have > before. I did never have dreams. Once a month maybe. > > My MS symptoms are stable, some days a little better, some days a > little worse, but I was wondering whether my LDN is spoilt. I have had > no new symptoms since starting it and I already walk better. We have > hot summer here in Greece (34-36 degrees Celsius), so I put LDN in the > fridge (about 7 Celsius). Is it wrong? Did this spoil my LDN? Should I > expect a fast recovery from my symptoms (which are not very disabling, > anyway), or it could take months to feel something? > > Thank you very much for your support. You have a wonderful group here. > > Stavros Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 Hi! Thank you all for your replies. > As for Copaxone .. my husband > decided to come off Avonex and go LDN alone .. if he progressed his > plan was to start copaxone. Nearly 3 years later .. he has not > progessed so has not started copaxone. Heh! I am very happy to hear that. I don't take Copaxone, nor I want to take it. 3 injections per week, when on Rebif, were enough. Seven are way too many for yet another useles and expensive drug. I am on LDN for about a month now. Symptoms come and go, but they are all of them old. It also happened prior to starting LDN. I don't know if it is normal, but I think it is. The temperature is very high these days. I just don't know what exactly to expect and this why I am wondering if LDN does something. Anyway, I feel much better since starting it, but is this the placebo effect? What should I expect from LDN? I am a little confused. There is so much conflicting information out there that is a little confusing for newcomers. Anyway, thanks again to all of you for your replies! Satvros Quote Link to comment Share on other sites More sharing options...
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