RE: Re: LDN routine, Loss of improvements & Regaining them

[Guest guest]

I agree with Francie & . I have SPMS (had it for 15 years) & after 7 months on LDN I had numerous improvements in different areas: 1 Flexibility of leg, first improvement which started after 2 weeks on LDN, (the other improvements followed gradually) at first only in the middle of the night (after taking LDN after 9pm) now all day as well – can kneel for the first time in 15 years2 Improved strength and balance of left leg, can stand balanced on both legs for the first time in many years (not very well). Combination of improved flexibility, strength & balance has lead to improvement in mobility3 Regained 80-90% of smell and taste which I lost nearly completely for 3 years4 Improved co-ordination of left hand. When I first regained it a few months after I started taking LDN I could type perfectly. Then I lost it due to allergic reaction to LDN & now I have the improved co- ordination but weakness of hand negatively impacts on the co-ordination. Little & ring finger were the weakest.5 I totally regained normal speaking - I had been gradually losing both the strength/projection of my voice for the last 2 years. Raising my voice and even talking was often an effort – now I am told not to talk so loud!6 Choking – much, much improved none in last few months7 No Pins & needles 8 No colds/flu & no bouts of sinus (which used to be a constant problem & lead to exacerbation of MS – LDN boosts immune system)9 No flares of pain like being jabbed with a needle – none in last five months10 Feel really good/cheerful BUT I had to stop LDN because of increasing severe spasms & intense pain all day & night. I have a baclofen pump that usually controls the pain & spasms but after having numerous tests a dye pumpogram showed that all the baclofen was leaking into the gut through a hole & not going down the spine. (This caused new weakness in left hand/arm which I have taken nearly 4 months to clear.) I had to go into hospital for a new catheter. Finally have no spasms/pain but because I had been off LDN for more than 3 months I had started LOSING the benefits. The following happened – flexibility & mobility much less, post nasal drip returned, some choking, lost most of sense of smell & taste, pain flares in toes came back. Then I restarted LDN taking 2.00 mg of LDN transdermally but spasms started from 3am (painless but intense) & the spasticity when I got up in the morning was so bad I could hardly walk, couldn’t sit & this lasted until 10 am. So I started trying varying the dose every way I could think of but spasms & the spasticity still persisted at intolerable levels. Then my kinesiologist told me of an Aboriginal remedy she was told by one of her clients who said it had really helped spasms her and spasticity. It sounds really weird but it has improved my spasms and spasticity hugely. (My spasms & spasticity have always been worse at night). I tape a slice of cork (I use a wine bottle cork) every night over my belly button (I find the clear leuco tape the best for this) and the benefits have been truly remarkable. It was cumulative - first night the cork decreased spasms/spasticity by 30% now spasms/spasticity are improved by as much as 98%. Also established through kinesiology that my body would tolerate 4.5ml once a week. After a month I started increasing it slowly. I currently take 4.5mg every night and have been for 2 months now. My sense of smell started coming back immediately– smelt coffee and the stuff the floor was cleaned with – so wonderful when you regain things you had lost. But smell & taste is not yet as good as they were after 7 months on LDN. Smell & taste and dexterity of hand, all come and go, sometimes really good and other times really poor. Now it can be difficult to use the index & middle finger but this started when the baclofen was going into my gut. The interesting thing is how I lost some improvements more quickly than others. My voice is really good again. I did notice my voice weakening/straining when I had been off LDN for 2 months and it has only become strong again after 2 months on 4.5 LDN. Once again I have no pain, no sinus, no choking, more flexibility & better balance. Feel really good/cheerful. Also 2 new benefits - bladder has improved enough for me to be able to stop taking medication/herbs. Though it is still not great. Also there is a more normal movement when I walk. I am just really happy to see any improvements. Trish This is exactly what happens with my Mom, who suffers from Crohn's or something close to it. Remember I told you guys that she took a trip out of town and forgot to take it with her. Three days, and she had to wear a diaper to drive home.More recently, she got lazy about making a new batch and once again, three days destroyed the " cure " that the LDN had accomplished. On a good note, going back on it almost instantly " cures " it again. I have read in the past about the first girl MS sufferer, a friend of Dr. Bahari's daughter? who moved to Europe after several years and ran out. It took longer than three days, but she too, started going down hill and had them send it to her. Once established on the LDN, it does not " seem " to do anything. You just take it routinely. But going off of it eventually shows how very important it is to those of us with apparently whacky immune systems. When I went off of it three days ahead of surgery and stayed off of it three days after, my MS depression and mental fog started to set back in. These were the first to disappear when starting the LDN. I would hate to think that a longer lapse would bring back the weakness, fatigue and paralysis that I had when I started. Franciehttp://LDN-for-MS.com>> On a related note, for the last 3-4 weeks my LDN routine got out of whack and I have missed a number of doses. If I wondered, I now know: although my pain levels have remained fairly stable and my energy has remained high, the IBS-like gut problems related to fibromyalgia have come back, and rapidly, following destabilization of my dosing regimen.> > So if I needed validation, I now have that. It appears that I now have more stamina overall than I did (because energy and pain levels remained improved), but the gut immediately got unhappy.> > fyi.> > --> LDN one year, Iodine Protocol 11 months> fibromyalgia, Hashi's, adrenal exhaustion> SO MUCH BETTER!> 20 pounds easy weight loss due to metabolism functioning

[Guest guest]

I agree with Francie & . I have SPMS (had it for 15 years) & after 7 months on LDN I had numerous improvements in different areas: 1 Flexibility of leg, first improvement which started after 2 weeks on LDN, (the other improvements followed gradually) at first only in the middle of the night (after taking LDN after 9pm) now all day as well – can kneel for the first time in 15 years2 Improved strength and balance of left leg, can stand balanced on both legs for the first time in many years (not very well). Combination of improved flexibility, strength & balance has lead to improvement in mobility3 Regained 80-90% of smell and taste which I lost nearly completely for 3 years4 Improved co-ordination of left hand. When I first regained it a few months after I started taking LDN I could type perfectly. Then I lost it due to allergic reaction to LDN & now I have the improved co- ordination but weakness of hand negatively impacts on the co-ordination. Little & ring finger were the weakest.5 I totally regained normal speaking - I had been gradually losing both the strength/projection of my voice for the last 2 years. Raising my voice and even talking was often an effort – now I am told not to talk so loud!6 Choking – much, much improved none in last few months7 No Pins & needles 8 No colds/flu & no bouts of sinus (which used to be a constant problem & lead to exacerbation of MS – LDN boosts immune system)9 No flares of pain like being jabbed with a needle – none in last five months10 Feel really good/cheerful BUT I had to stop LDN because of increasing severe spasms & intense pain all day & night. I have a baclofen pump that usually controls the pain & spasms but after having numerous tests a dye pumpogram showed that all the baclofen was leaking into the gut through a hole & not going down the spine. (This caused new weakness in left hand/arm which I have taken nearly 4 months to clear.) I had to go into hospital for a new catheter. Finally have no spasms/pain but because I had been off LDN for more than 3 months I had started LOSING the benefits. The following happened – flexibility & mobility much less, post nasal drip returned, some choking, lost most of sense of smell & taste, pain flares in toes came back. Then I restarted LDN taking 2.00 mg of LDN transdermally but spasms started from 3am (painless but intense) & the spasticity when I got up in the morning was so bad I could hardly walk, couldn’t sit & this lasted until 10 am. So I started trying varying the dose every way I could think of but spasms & the spasticity still persisted at intolerable levels. Then my kinesiologist told me of an Aboriginal remedy she was told by one of her clients who said it had really helped spasms her and spasticity. It sounds really weird but it has improved my spasms and spasticity hugely. (My spasms & spasticity have always been worse at night). I tape a slice of cork (I use a wine bottle cork) every night over my belly button (I find the clear leuco tape the best for this) and the benefits have been truly remarkable. It was cumulative - first night the cork decreased spasms/spasticity by 30% now spasms/spasticity are improved by as much as 98%. Also established through kinesiology that my body would tolerate 4.5ml once a week. After a month I started increasing it slowly. I currently take 4.5mg every night and have been for 2 months now. My sense of smell started coming back immediately– smelt coffee and the stuff the floor was cleaned with – so wonderful when you regain things you had lost. But smell & taste is not yet as good as they were after 7 months on LDN. Smell & taste and dexterity of hand, all come and go, sometimes really good and other times really poor. Now it can be difficult to use the index & middle finger but this started when the baclofen was going into my gut. The interesting thing is how I lost some improvements more quickly than others. My voice is really good again. I did notice my voice weakening/straining when I had been off LDN for 2 months and it has only become strong again after 2 months on 4.5 LDN. Once again I have no pain, no sinus, no choking, more flexibility & better balance. Feel really good/cheerful. Also 3 new benefits - bladder has improved enough for me to be able to stop taking medication/herbs. Though it is still not great. Also there is a more normal movement when I walk. I am able to throw a ball hard and straight again as opposed to wondering where and how it might land. I am just really happy to see any improvements. Trish This is exactly what happens with my Mom, who suffers from Crohn's or something close to it. Remember I told you guys that she took a trip out of town and forgot to take it with her. Three days, and she had to wear a diaper to drive home.More recently, she got lazy about making a new batch and once again, three days destroyed the " cure " that the LDN had accomplished. On a good note, going back on it almost instantly " cures " it again. I have read in the past about the first girl MS sufferer, a friend of Dr. Bahari's daughter? who moved to Europe after several years and ran out. It took longer than three days, but she too, started going down hill and had them send it to her. Once established on the LDN, it does not " seem " to do anything. You just take it routinely. But going off of it eventually shows how very important it is to those of us with apparently whacky immune systems. When I went off of it three days ahead of surgery and stayed off of it three days after, my MS depression and mental fog started to set back in. These were the first to disappear when starting the LDN. I would hate to think that a longer lapse would bring back the weakness, fatigue and paralysis that I had when I started. Franciehttp://LDN-for-MS.com>> On a related note, for the last 3-4 weeks my LDN routine got out of whack and I have missed a number of doses. If I wondered, I now know: although my pain levels have remained fairly stable and my energy has remained high, the IBS-like gut problems related to fibromyalgia have come back, and rapidly, following destabilization of my dosing regimen.> > So if I needed validation, I now have that. It appears that I now have more stamina overall than I did (because energy and pain levels remained improved), but the gut immediately got unhappy.> > fyi.> > --> LDN one year, Iodine Protocol 11 months> fibromyalgia, Hashi's, adrenal exhaustion> SO MUCH BETTER!> 20 pounds easy weight loss due to metabolism functioning