Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Can anyone tell me if LDN can cause liver trouble? Thanks, Wow Jodi, that's quite a recommendation. I have Hashimoto's for which I take T4 tabs and T3 drops, I still feel like it's on the low side though, you think this will fix that? Should I do a blood test before I start the LDN? And then do one every month or so? Because I have Hashimoto's all the blood work is free. I'm sure my joint pain is related to the Crohn's because before SCD there were times I couln't walk and had to remain in bed. It always occured with a flare-up or just after a flare-up. Since SCD, now over 1 year, I have never been bed ridden and have never had a flare-up. What I have is constant, annoying aching in the muscles now, which could be the hypothyroid. The serious debilitating joint pain is gone with the Crohn's (Thank you Elaine!!!) I'm hoping that with LDN I will gain energy, sleep better and end the muscle pain. Last night I had to get up at 3am and do stretching just to get my muscles to settle down so I could sleep. I could have sleep apnea but this same neuro told me I didn't because I wasn't fat enough!! (I'm 15 lbs overweight) He said I didn't want to sleep overnight in the hospital and have those tests. Actuallly I would like to have it. My son says I snort really loud and scary when I sleep, he can hear it in the next room and it wakes him up. Doctors can be such a block to good health LOL Ann, Living in Italy Undiagnosed Crohn's since 1977 Diagnosed 15 years Sacroiliitis 25 years Rheumatoid arthritis 25 years Pyoderma Gangronosum 2 years SCD since July, 2008 Meds: None From: jodah235 <jodah235 (AT) yahoo (DOT) com>To: BTVC-SCD Sent: Tuesday, August 18, 2009 3:27:31 PMSubject: Re: OT- LDN in Italy Hi Ann,I took LDN for a while. Then I got off of it for ileocolic resection. I needed to be on pain medication and anesthesia.I had a hard time with LDN... It was miraculous for my bowel. Before I started there was question if I have Long term Lyme Disease and co-infections. I was skeptical about this. I have had many names of illnesses thrown at me over the years. I had blood tests come back positive for Co-Infections but if you read the literature about this it is highly confusing and esoteric like. Anyway, I started LDN and physically my muscular skeletal system and neurological system just went cuckoo, later I learned that my increase in symptoms were exactly what those coinfections cause. So did my Thyroid values- It went up and down, up and down (have many blood tests to prove this so we had to start taking blood work at specific hours to make sure it was the exact time each time, same labs etc) That is why I think if people have Thyroid issues and go on LDN- just give LDN a go because sometimes LDN just "adjusts" peoples thyroid values.Anyway, there was this difficult time because my normal prescribing LDN doc her hours were cut down at the office. So I saw a different doc and he did not know my level of sensitivity. Anyway, he upped my dosage too quick during this adjustment phase.. During this time my bowel started getting miraculously better.. Like just amazing leaps and bounds.This doc having interviewed world renowned Lyme docs from Columbia Pres saw my Lyme results and was basically "Jodi, this is very real I want you enrolled in their program" I spoke to them and they wanted like $10,000 and maybe insurance would cover it.. I nearly passed out. I decided I am not going to pay that amount to be told I have something and this is the extent of it. I decided I rather put my resources into alternative care because I cannot take long term antibiotics due to getting C Diff when I try. Which in turn makes the Crohn's worse.The general idea Ann is that if you are sensitive and experience certain symptoms IE joint issues one should just start at a small dosage as sometimes joint issues can temporarily get worse for *some* people and then get better (mostly people with MS). This does not happen all the time. I spoke to some LDN'ers about this stuff because at the time I was trying to figure out things for myself. If your joint issues are caused by the Crohn's the LDN will take care of this.LDN can help isolate why we have some long term problems. Like Lyme Disease and or co-infections. . Sleep Apnea if people aren't responding for pain management. Systemic Candida issues etc.It really is a wonder drug and IMO it's such a major discovery. It is however a threat to Big Pharma as Naltrexone is generic (no patent) and so serious money is not made like the new generation biologics etc.I am confident it will help you. Take it slow. Even if you have to wait a couple of weeks between each increase of doses.If I knew my Lyme issues were totally eradicated I would go back on LDN in a heartbeat. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Can anyone tell me if LDN can cause liver trouble? Thanks, Wow Jodi, that's quite a recommendation. I have Hashimoto's for which I take T4 tabs and T3 drops, I still feel like it's on the low side though, you think this will fix that? Should I do a blood test before I start the LDN? And then do one every month or so? Because I have Hashimoto's all the blood work is free. I'm sure my joint pain is related to the Crohn's because before SCD there were times I couln't walk and had to remain in bed. It always occured with a flare-up or just after a flare-up. Since SCD, now over 1 year, I have never been bed ridden and have never had a flare-up. What I have is constant, annoying aching in the muscles now, which could be the hypothyroid. The serious debilitating joint pain is gone with the Crohn's (Thank you Elaine!!!) I'm hoping that with LDN I will gain energy, sleep better and end the muscle pain. Last night I had to get up at 3am and do stretching just to get my muscles to settle down so I could sleep. I could have sleep apnea but this same neuro told me I didn't because I wasn't fat enough!! (I'm 15 lbs overweight) He said I didn't want to sleep overnight in the hospital and have those tests. Actuallly I would like to have it. My son says I snort really loud and scary when I sleep, he can hear it in the next room and it wakes him up. Doctors can be such a block to good health LOL Ann, Living in Italy Undiagnosed Crohn's since 1977 Diagnosed 15 years Sacroiliitis 25 years Rheumatoid arthritis 25 years Pyoderma Gangronosum 2 years SCD since July, 2008 Meds: None From: jodah235 <jodah235 (AT) yahoo (DOT) com>To: BTVC-SCD Sent: Tuesday, August 18, 2009 3:27:31 PMSubject: Re: OT- LDN in Italy Hi Ann,I took LDN for a while. Then I got off of it for ileocolic resection. I needed to be on pain medication and anesthesia.I had a hard time with LDN... It was miraculous for my bowel. Before I started there was question if I have Long term Lyme Disease and co-infections. I was skeptical about this. I have had many names of illnesses thrown at me over the years. I had blood tests come back positive for Co-Infections but if you read the literature about this it is highly confusing and esoteric like. Anyway, I started LDN and physically my muscular skeletal system and neurological system just went cuckoo, later I learned that my increase in symptoms were exactly what those coinfections cause. So did my Thyroid values- It went up and down, up and down (have many blood tests to prove this so we had to start taking blood work at specific hours to make sure it was the exact time each time, same labs etc) That is why I think if people have Thyroid issues and go on LDN- just give LDN a go because sometimes LDN just "adjusts" peoples thyroid values.Anyway, there was this difficult time because my normal prescribing LDN doc her hours were cut down at the office. So I saw a different doc and he did not know my level of sensitivity. Anyway, he upped my dosage too quick during this adjustment phase.. During this time my bowel started getting miraculously better.. Like just amazing leaps and bounds.This doc having interviewed world renowned Lyme docs from Columbia Pres saw my Lyme results and was basically "Jodi, this is very real I want you enrolled in their program" I spoke to them and they wanted like $10,000 and maybe insurance would cover it.. I nearly passed out. I decided I am not going to pay that amount to be told I have something and this is the extent of it. I decided I rather put my resources into alternative care because I cannot take long term antibiotics due to getting C Diff when I try. Which in turn makes the Crohn's worse.The general idea Ann is that if you are sensitive and experience certain symptoms IE joint issues one should just start at a small dosage as sometimes joint issues can temporarily get worse for *some* people and then get better (mostly people with MS). This does not happen all the time. I spoke to some LDN'ers about this stuff because at the time I was trying to figure out things for myself. If your joint issues are caused by the Crohn's the LDN will take care of this.LDN can help isolate why we have some long term problems. Like Lyme Disease and or co-infections. . Sleep Apnea if people aren't responding for pain management. Systemic Candida issues etc.It really is a wonder drug and IMO it's such a major discovery. It is however a threat to Big Pharma as Naltrexone is generic (no patent) and so serious money is not made like the new generation biologics etc.I am confident it will help you. Take it slow. Even if you have to wait a couple of weeks between each increase of doses.If I knew my Lyme issues were totally eradicated I would go back on LDN in a heartbeat. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Thanks, I joined the group but every e-mail gets returned as undeliverable!!! I cannot believe this, may be you have their e-mail address to contact them? My son was on LDN, and got stopped by his homeopatic doctor who claimed that his liver is distressed! I need to know if this is possible or it someone is playing games with me. Thanks, Hi ,It is best you ask your questions here;http://health.groups.yahoo.com/group/lowdosenaltrexone/?yguid=333244357You need to join.LDN does not cause liver damage.Sometimes it gets confused with Full dose naltrexone. These are two completely different things!!! LDN does not do this at all.But ask your specific questions to the group as there are many experts over there.Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Thanks, I joined the group but every e-mail gets returned as undeliverable!!! I cannot believe this, may be you have their e-mail address to contact them? My son was on LDN, and got stopped by his homeopatic doctor who claimed that his liver is distressed! I need to know if this is possible or it someone is playing games with me. Thanks, Hi ,It is best you ask your questions here;http://health.groups.yahoo.com/group/lowdosenaltrexone/?yguid=333244357You need to join.LDN does not cause liver damage.Sometimes it gets confused with Full dose naltrexone. These are two completely different things!!! LDN does not do this at all.But ask your specific questions to the group as there are many experts over there.Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Thanks, I joined the group but every e-mail gets returned as undeliverable!!! I cannot believe this, may be you have their e-mail address to contact them? My son was on LDN, and got stopped by his homeopatic doctor who claimed that his liver is distressed! I need to know if this is possible or it someone is playing games with me. Thanks, Hi ,It is best you ask your questions here;http://health.groups.yahoo.com/group/lowdosenaltrexone/?yguid=333244357You need to join.LDN does not cause liver damage.Sometimes it gets confused with Full dose naltrexone. These are two completely different things!!! LDN does not do this at all.But ask your specific questions to the group as there are many experts over there.Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Hi Jodi, Yeah, I think my doc was very confused about the drug, first he really had never heard of any off lable use for it so he thought it was a bunch of internet hogwash, then he saw the research from a reputable institute in Italy done by an Italian neuro so he wanted to learn about it and possibly contact her. He at first said it was an immune suppressant like cortisone and I said no, it's an immune modulator. He recommended I see an immunologist if I wanted to work on my immune system. After seeing the use of the drug he said it was another name for Methadone. He refused to believe one drug could help so many illneses and he said everyone has "auto-immune" problems. He was frustrating but maybe he'll look into it. I gave him the ldnitalia website address too. The instructions for using a low dose are on the ldnitalia website. I don't have to mix tablets with water because it comes in liquid 50 mg vials and I'm supposed to take 6 cc using a syringe (I didn't want to ask for those because she really WILL think I'm an addict LOL) then remove the needle and squirt it into your mouth. (4cc = 1mg) so 6 cc is equal to 1.5 mg, 8 = 2 mg, etc. The website says to increase .5 mgs a week, is that about right? Is this stuff going to hurt my joints more? That's the reason I want to take it, not for Crohn's, SCD has done wonders for the Crohn's I hardly know I have it anymore. Do you take LDN? Has it helped? Ann, Living in Italy Undiagnosed Crohn's since 1977 Diagnosed 15 years Sacroiliitis 25 years Rheumatoid arthritis 25 years Pyoderma Gangronosum 2 years SCD since July, 2008 Meds: None To: BTVC-SCD Sent: Tuesday, August 18, 2009 12:54:37 PMSubject: Re: OT- LDN in Italy ,Methadone is a narcotic used to "help" opiate addicts get off of Heroine or sometimes used to help people use more pain killers when they already used the maximum amount. Naltrexone is not an opiate. Naltrexone in the full dosage can help people get off of narcotics such as Methadone.Your doc would not give you Methadone.So I am confused- the pharmacy ordered the Naltrexone for you? What is the strength? Do you have to make low dosages yourself?Did you get any resources in Italy? Did you get explanations how to make a low dosage (I personally think with your joint issues you should start at a lower dosage)Did you explain to your Neuro the reason it helps so many illnesses is that is modulates the immune system so it directly targets people with Auto-immune disease?Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Hi Jodi, Yeah, I think my doc was very confused about the drug, first he really had never heard of any off lable use for it so he thought it was a bunch of internet hogwash, then he saw the research from a reputable institute in Italy done by an Italian neuro so he wanted to learn about it and possibly contact her. He at first said it was an immune suppressant like cortisone and I said no, it's an immune modulator. He recommended I see an immunologist if I wanted to work on my immune system. After seeing the use of the drug he said it was another name for Methadone. He refused to believe one drug could help so many illneses and he said everyone has "auto-immune" problems. He was frustrating but maybe he'll look into it. I gave him the ldnitalia website address too. The instructions for using a low dose are on the ldnitalia website. I don't have to mix tablets with water because it comes in liquid 50 mg vials and I'm supposed to take 6 cc using a syringe (I didn't want to ask for those because she really WILL think I'm an addict LOL) then remove the needle and squirt it into your mouth. (4cc = 1mg) so 6 cc is equal to 1.5 mg, 8 = 2 mg, etc. The website says to increase .5 mgs a week, is that about right? Is this stuff going to hurt my joints more? That's the reason I want to take it, not for Crohn's, SCD has done wonders for the Crohn's I hardly know I have it anymore. Do you take LDN? Has it helped? Ann, Living in Italy Undiagnosed Crohn's since 1977 Diagnosed 15 years Sacroiliitis 25 years Rheumatoid arthritis 25 years Pyoderma Gangronosum 2 years SCD since July, 2008 Meds: None To: BTVC-SCD Sent: Tuesday, August 18, 2009 12:54:37 PMSubject: Re: OT- LDN in Italy ,Methadone is a narcotic used to "help" opiate addicts get off of Heroine or sometimes used to help people use more pain killers when they already used the maximum amount. Naltrexone is not an opiate. Naltrexone in the full dosage can help people get off of narcotics such as Methadone.Your doc would not give you Methadone.So I am confused- the pharmacy ordered the Naltrexone for you? What is the strength? Do you have to make low dosages yourself?Did you get any resources in Italy? Did you get explanations how to make a low dosage (I personally think with your joint issues you should start at a lower dosage)Did you explain to your Neuro the reason it helps so many illnesses is that is modulates the immune system so it directly targets people with Auto-immune disease?Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Wow Jodi, that's quite a recommendation. I have Hashimoto's for which I take T4 tabs and T3 drops, I still feel like it's on the low side though, you think this will fix that? Should I do a blood test before I start the LDN? And then do one every month or so? Because I have Hashimoto's all the blood work is free. I'm sure my joint pain is related to the Crohn's because before SCD there were times I couln't walk and had to remain in bed. It always occured with a flare-up or just after a flare-up. Since SCD, now over 1 year, I have never been bed ridden and have never had a flare-up. What I have is constant, annoying aching in the muscles now, which could be the hypothyroid. The serious debilitating joint pain is gone with the Crohn's (Thank you Elaine!!!) I'm hoping that with LDN I will gain energy, sleep better and end the muscle pain. Last night I had to get up at 3am and do stretching just to get my muscles to settle down so I could sleep. I could have sleep apnea but this same neuro told me I didn't because I wasn't fat enough!! (I'm 15 lbs overweight) He said I didn't want to sleep overnight in the hospital and have those tests. Actuallly I would like to have it. My son says I snort really loud and scary when I sleep, he can hear it in the next room and it wakes him up. Doctors can be such a block to good health LOL Ann, Living in Italy Undiagnosed Crohn's since 1977 Diagnosed 15 years Sacroiliitis 25 years Rheumatoid arthritis 25 years Pyoderma Gangronosum 2 years SCD since July, 2008 Meds: None To: BTVC-SCD Sent: Tuesday, August 18, 2009 3:27:31 PMSubject: Re: OT- LDN in Italy Hi Ann,I took LDN for a while. Then I got off of it for ileocolic resection. I needed to be on pain medication and anesthesia.I had a hard time with LDN... It was miraculous for my bowel. Before I started there was question if I have Long term Lyme Disease and co-infections. I was skeptical about this. I have had many names of illnesses thrown at me over the years. I had blood tests come back positive for Co-Infections but if you read the literature about this it is highly confusing and esoteric like. Anyway, I started LDN and physically my muscular skeletal system and neurological system just went cuckoo, later I learned that my increase in symptoms were exactly what those coinfections cause. So did my Thyroid values- It went up and down, up and down (have many blood tests to prove this so we had to start taking blood work at specific hours to make sure it was the exact time each time, same labs etc) That is why I think if people have Thyroid issues and go on LDN- just give LDN a go because sometimes LDN just "adjusts" peoples thyroid values.Anyway, there was this difficult time because my normal prescribing LDN doc her hours were cut down at the office. So I saw a different doc and he did not know my level of sensitivity. Anyway, he upped my dosage too quick during this adjustment phase.. During this time my bowel started getting miraculously better.. Like just amazing leaps and bounds.This doc having interviewed world renowned Lyme docs from Columbia Pres saw my Lyme results and was basically "Jodi, this is very real I want you enrolled in their program" I spoke to them and they wanted like $10,000 and maybe insurance would cover it.. I nearly passed out. I decided I am not going to pay that amount to be told I have something and this is the extent of it. I decided I rather put my resources into alternative care because I cannot take long term antibiotics due to getting C Diff when I try. Which in turn makes the Crohn's worse.The general idea Ann is that if you are sensitive and experience certain symptoms IE joint issues one should just start at a small dosage as sometimes joint issues can temporarily get worse for *some* people and then get better (mostly people with MS). This does not happen all the time. I spoke to some LDN'ers about this stuff because at the time I was trying to figure out things for myself. If your joint issues are caused by the Crohn's the LDN will take care of this.LDN can help isolate why we have some long term problems. Like Lyme Disease and or co-infections. . Sleep Apnea if people aren't responding for pain management. Systemic Candida issues etc.It really is a wonder drug and IMO it's such a major discovery. It is however a threat to Big Pharma as Naltrexone is generic (no patent) and so serious money is not made like the new generation biologics etc.I am confident it will help you. Take it slow. Even if you have to wait a couple of weeks between each increase of doses.If I knew my Lyme issues were totally eradicated I would go back on LDN in a heartbeat. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Wow Jodi, that's quite a recommendation. I have Hashimoto's for which I take T4 tabs and T3 drops, I still feel like it's on the low side though, you think this will fix that? Should I do a blood test before I start the LDN? And then do one every month or so? Because I have Hashimoto's all the blood work is free. I'm sure my joint pain is related to the Crohn's because before SCD there were times I couln't walk and had to remain in bed. It always occured with a flare-up or just after a flare-up. Since SCD, now over 1 year, I have never been bed ridden and have never had a flare-up. What I have is constant, annoying aching in the muscles now, which could be the hypothyroid. The serious debilitating joint pain is gone with the Crohn's (Thank you Elaine!!!) I'm hoping that with LDN I will gain energy, sleep better and end the muscle pain. Last night I had to get up at 3am and do stretching just to get my muscles to settle down so I could sleep. I could have sleep apnea but this same neuro told me I didn't because I wasn't fat enough!! (I'm 15 lbs overweight) He said I didn't want to sleep overnight in the hospital and have those tests. Actuallly I would like to have it. My son says I snort really loud and scary when I sleep, he can hear it in the next room and it wakes him up. Doctors can be such a block to good health LOL Ann, Living in Italy Undiagnosed Crohn's since 1977 Diagnosed 15 years Sacroiliitis 25 years Rheumatoid arthritis 25 years Pyoderma Gangronosum 2 years SCD since July, 2008 Meds: None To: BTVC-SCD Sent: Tuesday, August 18, 2009 3:27:31 PMSubject: Re: OT- LDN in Italy Hi Ann,I took LDN for a while. Then I got off of it for ileocolic resection. I needed to be on pain medication and anesthesia.I had a hard time with LDN... It was miraculous for my bowel. Before I started there was question if I have Long term Lyme Disease and co-infections. I was skeptical about this. I have had many names of illnesses thrown at me over the years. I had blood tests come back positive for Co-Infections but if you read the literature about this it is highly confusing and esoteric like. Anyway, I started LDN and physically my muscular skeletal system and neurological system just went cuckoo, later I learned that my increase in symptoms were exactly what those coinfections cause. So did my Thyroid values- It went up and down, up and down (have many blood tests to prove this so we had to start taking blood work at specific hours to make sure it was the exact time each time, same labs etc) That is why I think if people have Thyroid issues and go on LDN- just give LDN a go because sometimes LDN just "adjusts" peoples thyroid values.Anyway, there was this difficult time because my normal prescribing LDN doc her hours were cut down at the office. So I saw a different doc and he did not know my level of sensitivity. Anyway, he upped my dosage too quick during this adjustment phase.. During this time my bowel started getting miraculously better.. Like just amazing leaps and bounds.This doc having interviewed world renowned Lyme docs from Columbia Pres saw my Lyme results and was basically "Jodi, this is very real I want you enrolled in their program" I spoke to them and they wanted like $10,000 and maybe insurance would cover it.. I nearly passed out. I decided I am not going to pay that amount to be told I have something and this is the extent of it. I decided I rather put my resources into alternative care because I cannot take long term antibiotics due to getting C Diff when I try. Which in turn makes the Crohn's worse.The general idea Ann is that if you are sensitive and experience certain symptoms IE joint issues one should just start at a small dosage as sometimes joint issues can temporarily get worse for *some* people and then get better (mostly people with MS). This does not happen all the time. I spoke to some LDN'ers about this stuff because at the time I was trying to figure out things for myself. If your joint issues are caused by the Crohn's the LDN will take care of this.LDN can help isolate why we have some long term problems. Like Lyme Disease and or co-infections. . Sleep Apnea if people aren't responding for pain management. Systemic Candida issues etc.It really is a wonder drug and IMO it's such a major discovery. It is however a threat to Big Pharma as Naltrexone is generic (no patent) and so serious money is not made like the new generation biologics etc.I am confident it will help you. Take it slow. Even if you have to wait a couple of weeks between each increase of doses.If I knew my Lyme issues were totally eradicated I would go back on LDN in a heartbeat. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Wow Jodi, that's quite a recommendation. I have Hashimoto's for which I take T4 tabs and T3 drops, I still feel like it's on the low side though, you think this will fix that? Should I do a blood test before I start the LDN? And then do one every month or so? Because I have Hashimoto's all the blood work is free. I'm sure my joint pain is related to the Crohn's because before SCD there were times I couln't walk and had to remain in bed. It always occured with a flare-up or just after a flare-up. Since SCD, now over 1 year, I have never been bed ridden and have never had a flare-up. What I have is constant, annoying aching in the muscles now, which could be the hypothyroid. The serious debilitating joint pain is gone with the Crohn's (Thank you Elaine!!!) I'm hoping that with LDN I will gain energy, sleep better and end the muscle pain. Last night I had to get up at 3am and do stretching just to get my muscles to settle down so I could sleep. I could have sleep apnea but this same neuro told me I didn't because I wasn't fat enough!! (I'm 15 lbs overweight) He said I didn't want to sleep overnight in the hospital and have those tests. Actuallly I would like to have it. My son says I snort really loud and scary when I sleep, he can hear it in the next room and it wakes him up. Doctors can be such a block to good health LOL Ann, Living in Italy Undiagnosed Crohn's since 1977 Diagnosed 15 years Sacroiliitis 25 years Rheumatoid arthritis 25 years Pyoderma Gangronosum 2 years SCD since July, 2008 Meds: None To: BTVC-SCD Sent: Tuesday, August 18, 2009 3:27:31 PMSubject: Re: OT- LDN in Italy Hi Ann,I took LDN for a while. Then I got off of it for ileocolic resection. I needed to be on pain medication and anesthesia.I had a hard time with LDN... It was miraculous for my bowel. Before I started there was question if I have Long term Lyme Disease and co-infections. I was skeptical about this. I have had many names of illnesses thrown at me over the years. I had blood tests come back positive for Co-Infections but if you read the literature about this it is highly confusing and esoteric like. Anyway, I started LDN and physically my muscular skeletal system and neurological system just went cuckoo, later I learned that my increase in symptoms were exactly what those coinfections cause. So did my Thyroid values- It went up and down, up and down (have many blood tests to prove this so we had to start taking blood work at specific hours to make sure it was the exact time each time, same labs etc) That is why I think if people have Thyroid issues and go on LDN- just give LDN a go because sometimes LDN just "adjusts" peoples thyroid values.Anyway, there was this difficult time because my normal prescribing LDN doc her hours were cut down at the office. So I saw a different doc and he did not know my level of sensitivity. Anyway, he upped my dosage too quick during this adjustment phase.. During this time my bowel started getting miraculously better.. Like just amazing leaps and bounds.This doc having interviewed world renowned Lyme docs from Columbia Pres saw my Lyme results and was basically "Jodi, this is very real I want you enrolled in their program" I spoke to them and they wanted like $10,000 and maybe insurance would cover it.. I nearly passed out. I decided I am not going to pay that amount to be told I have something and this is the extent of it. I decided I rather put my resources into alternative care because I cannot take long term antibiotics due to getting C Diff when I try. Which in turn makes the Crohn's worse.The general idea Ann is that if you are sensitive and experience certain symptoms IE joint issues one should just start at a small dosage as sometimes joint issues can temporarily get worse for *some* people and then get better (mostly people with MS). This does not happen all the time. I spoke to some LDN'ers about this stuff because at the time I was trying to figure out things for myself. If your joint issues are caused by the Crohn's the LDN will take care of this.LDN can help isolate why we have some long term problems. Like Lyme Disease and or co-infections. . Sleep Apnea if people aren't responding for pain management. Systemic Candida issues etc.It really is a wonder drug and IMO it's such a major discovery. It is however a threat to Big Pharma as Naltrexone is generic (no patent) and so serious money is not made like the new generation biologics etc.I am confident it will help you. Take it slow. Even if you have to wait a couple of weeks between each increase of doses.If I knew my Lyme issues were totally eradicated I would go back on LDN in a heartbeat. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Oh, Jodi, if ONLY Vioxx were still on the market! I loved Vioxx and Toradol, which caused major internal bleeding in me but hey, no pain!! Marilyn is just full of good info on the sleep apnea and she has taught me so much about it. I really think if I could sleep I could find some energy and get rid of some muscle pain. I have only two choices to get that sleep test one is that neuro and the other is a pulmonary/respiratory specialist, my GP is one of those so I can ask him. Thanks for your help!!! Ann, Living in Italy Undiagnosed Crohn's since 1977 Diagnosed 15 years Sacroiliitis 25 years Rheumatoid arthritis 25 years Pyoderma Gangronosum 2 years SCD since July, 2008 Meds: None To: BTVC-SCD Sent: Tuesday, August 18, 2009 4:21:36 PMSubject: Re: OT- LDN in Italy Hi Ann,Absolutely get blood work for the Thyroid before the LDN. I would actually get blood work ever increase of dosage too. Monitor your thyroid and make sure the LDN doesn't make you HyperT. Just pay attention. I had a wonderful doc that knows all about this stuff so she held my hand through this journey- I don't think you have such a resource so pay attention and ask questions on the LDN site.I had horrible Crohn's flares in the joints too. Also, debilitating. . couldn't walk. Luckily my husband carried me those couple of times. I remember at times I felt like almost paralyzed and had to physically "pick up" my legs and move 'em. I would take Vioxx back in the day and get Toradol shots. Those worked like a charm. Not good for IBD though.I am confident it will get better for you. At least I hope and pray for you Ann that this will help.Marilyn corrected my thinking that one has to be overweight in order to have Sleep Apnea. This is not true. I am not overweight at all and they think I have it. Once again there is no size fits all. Maybe you can see another doc about this?So sorry it is such a pain..One gets sick just dealing with all these doctors.. It's a full time job achieving health.Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 > Hi , > > It is best you ask your questions here; > > http://health.groups.yahoo.com/group/lowdosenaltrexone/? > yguid=333244357 > > You need to join. > > LDN does not cause liver damage. However, if you already have a liver disease, it may not be the drug for you, as it gets metabolized in the liver, thus putting some stress on it. Even the transdermal dose does this, though to a far lesser extent than the regular, ingested, digested capsule. Mara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Why don't you ask your question posting with the website interface. Go to the website membership info,look at the left hand menu and click on post. Also, go to your yahoo groups page, click on the lowdosenaltrexonegroup page look around on the top left for the clickable link thatsays edit your membership, and make sure your info for thatgroup is correct. MaraThanks, I joined the group but every e-mail gets returned as undeliverable!!! I cannot believe this, may be you have their e-mail address to contact them?My son was on LDN, and got stopped by his homeopatic doctor who claimed that his liver is distressed! I need to know if this is possible or it someone is playing games with me.Thanks, Hi ,It is best you ask your questions here;http://health.groups.yahoo.com/group/lowdosenaltrexone/?yguid=333244357You need to join.LDN does not cause liver damage.Sometimes it gets confused with Full dose naltrexone. These are two completely different things!!! LDN does not do this at all.But ask your specific questions to the group as there are many experts over there.Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Hi Ann, My dad has been on LDN since the start of May for Hashimotos, Fibromyalgia and Celiac disease. At that time he was taking 125mcg of oroxine. By the start of August he had no hyper symptoms. The earliest I have heard of for a person needing to drop there dosage down has been 4 months. At the start of August I read a book called Stop The Thyroid Madness. I realised most of the symptoms that I thought were from his fibromyalgia were actually symptoms of his thyroid medication not working properly. So he has spent the last 2 weeks swapping over to desiccated thyroid (Naturethroid). We are going by his ft3 and ft4 levels from now on. Not by the tsh. We are doing this all on our own but we get wonderful support from the yahoo groups including this one. Before LDN dad was on fentanyl patches for his pain but he no longer takes it. I would say that his tiredness has not gone away but I think that has more to do with thyroid and just changing medications looks like it is helping. My dad is going to keep taking LDN for the rest of his life.He tells anyone that listens to get on it. Sky To: BTVC-SCD Sent: Wednesday, 19 August, 2009 12:08:58 AMSubject: Re: Re: OT- LDN in Italy Wow Jodi, that's quite a recommendation. I have Hashimoto's for which I take T4 tabs and T3 drops, I still feel like it's on the low side though, you think this will fix that? Should I do a blood test before I start the LDN? And then do one every month or so? Because I have Hashimoto's all the blood work is free. I'm sure my joint pain is related to the Crohn's because before SCD there were times I couln't walk and had to remain in bed. It always occured with a flare-up or just after a flare-up. Since SCD, now over 1 year, I have never been bed ridden and have never had a flare-up. What I have is constant, annoying aching in the muscles now, which could be the hypothyroid. The serious debilitating joint pain is gone with the Crohn's (Thank you Elaine!!!) I'm hoping that with LDN I will gain energy, sleep better and end the muscle pain. Last night I had to get up at 3am and do stretching just to get my muscles to settle down so I could sleep. I could have sleep apnea but this same neuro told me I didn't because I wasn't fat enough!! (I'm 15 lbs overweight) He said I didn't want to sleep overnight in the hospital and have those tests. Actuallly I would like to have it. My son says I snort really loud and scary when I sleep, he can hear it in the next room and it wakes him up. Doctors can be such a block to good health LOL Ann, Living in Italy Undiagnosed Crohn's since 1977 Diagnosed 15 years Sacroiliitis 25 years Rheumatoid arthritis 25 years Pyoderma Gangronosum 2 years SCD since July, 2008 Meds: None From: jodah235 <jodah235 (AT) yahoo (DOT) com>To: BTVC-SCD@yahoogroup s.comSent: Tuesday, August 18, 2009 3:27:31 PMSubject: Re: OT- LDN in Italy Hi Ann,I took LDN for a while. Then I got off of it for ileocolic resection. I needed to be on pain medication and anesthesia.I had a hard time with LDN... It was miraculous for my bowel. Before I started there was question if I have Long term Lyme Disease and co-infections. I was skeptical about this. I have had many names of illnesses thrown at me over the years. I had blood tests come back positive for Co-Infections but if you read the literature about this it is highly confusing and esoteric like. Anyway, I started LDN and physically my muscular skeletal system and neurological system just went cuckoo, later I learned that my increase in symptoms were exactly what those coinfections cause. So did my Thyroid values- It went up and down, up and down (have many blood tests to prove this so we had to start taking blood work at specific hours to make sure it was the exact time each time, same labs etc) That is why I think if people have Thyroid issues and go on LDN- just give LDN a go because sometimes LDN just "adjusts" peoples thyroid values.Anyway, there was this difficult time because my normal prescribing LDN doc her hours were cut down at the office. So I saw a different doc and he did not know my level of sensitivity. Anyway, he upped my dosage too quick during this adjustment phase.. During this time my bowel started getting miraculously better.. Like just amazing leaps and bounds.This doc having interviewed world renowned Lyme docs from Columbia Pres saw my Lyme results and was basically "Jodi, this is very real I want you enrolled in their program" I spoke to them and they wanted like $10,000 and maybe insurance would cover it.. I nearly passed out. I decided I am not going to pay that amount to be told I have something and this is the extent of it. I decided I rather put my resources into alternative care because I cannot take long term antibiotics due to getting C Diff when I try. Which in turn makes the Crohn's worse.The general idea Ann is that if you are sensitive and experience certain symptoms IE joint issues one should just start at a small dosage as sometimes joint issues can temporarily get worse for *some* people and then get better (mostly people with MS). This does not happen all the time. I spoke to some LDN'ers about this stuff because at the time I was trying to figure out things for myself. If your joint issues are caused by the Crohn's the LDN will take care of this.LDN can help isolate why we have some long term problems. Like Lyme Disease and or co-infections. . Sleep Apnea if people aren't responding for pain management. Systemic Candida issues etc.It really is a wonder drug and IMO it's such a major discovery. It is however a threat to Big Pharma as Naltrexone is generic (no patent) and so serious money is not made like the new generation biologics etc.I am confident it will help you. Take it slow. Even if you have to wait a couple of weeks between each increase of doses.If I knew my Lyme issues were totally eradicated I would go back on LDN in a heartbeat. Jodi Find local businesses and services in your area with Yahoo!7 Local. Get started. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Hi Ann, My dad has been on LDN since the start of May for Hashimotos, Fibromyalgia and Celiac disease. At that time he was taking 125mcg of oroxine. By the start of August he had no hyper symptoms. The earliest I have heard of for a person needing to drop there dosage down has been 4 months. At the start of August I read a book called Stop The Thyroid Madness. I realised most of the symptoms that I thought were from his fibromyalgia were actually symptoms of his thyroid medication not working properly. So he has spent the last 2 weeks swapping over to desiccated thyroid (Naturethroid). We are going by his ft3 and ft4 levels from now on. Not by the tsh. We are doing this all on our own but we get wonderful support from the yahoo groups including this one. Before LDN dad was on fentanyl patches for his pain but he no longer takes it. I would say that his tiredness has not gone away but I think that has more to do with thyroid and just changing medications looks like it is helping. My dad is going to keep taking LDN for the rest of his life.He tells anyone that listens to get on it. Sky To: BTVC-SCD Sent: Wednesday, 19 August, 2009 12:08:58 AMSubject: Re: Re: OT- LDN in Italy Wow Jodi, that's quite a recommendation. I have Hashimoto's for which I take T4 tabs and T3 drops, I still feel like it's on the low side though, you think this will fix that? Should I do a blood test before I start the LDN? And then do one every month or so? Because I have Hashimoto's all the blood work is free. I'm sure my joint pain is related to the Crohn's because before SCD there were times I couln't walk and had to remain in bed. It always occured with a flare-up or just after a flare-up. Since SCD, now over 1 year, I have never been bed ridden and have never had a flare-up. What I have is constant, annoying aching in the muscles now, which could be the hypothyroid. The serious debilitating joint pain is gone with the Crohn's (Thank you Elaine!!!) I'm hoping that with LDN I will gain energy, sleep better and end the muscle pain. Last night I had to get up at 3am and do stretching just to get my muscles to settle down so I could sleep. I could have sleep apnea but this same neuro told me I didn't because I wasn't fat enough!! (I'm 15 lbs overweight) He said I didn't want to sleep overnight in the hospital and have those tests. Actuallly I would like to have it. My son says I snort really loud and scary when I sleep, he can hear it in the next room and it wakes him up. Doctors can be such a block to good health LOL Ann, Living in Italy Undiagnosed Crohn's since 1977 Diagnosed 15 years Sacroiliitis 25 years Rheumatoid arthritis 25 years Pyoderma Gangronosum 2 years SCD since July, 2008 Meds: None From: jodah235 <jodah235 (AT) yahoo (DOT) com>To: BTVC-SCD@yahoogroup s.comSent: Tuesday, August 18, 2009 3:27:31 PMSubject: Re: OT- LDN in Italy Hi Ann,I took LDN for a while. Then I got off of it for ileocolic resection. I needed to be on pain medication and anesthesia.I had a hard time with LDN... It was miraculous for my bowel. Before I started there was question if I have Long term Lyme Disease and co-infections. I was skeptical about this. I have had many names of illnesses thrown at me over the years. I had blood tests come back positive for Co-Infections but if you read the literature about this it is highly confusing and esoteric like. Anyway, I started LDN and physically my muscular skeletal system and neurological system just went cuckoo, later I learned that my increase in symptoms were exactly what those coinfections cause. So did my Thyroid values- It went up and down, up and down (have many blood tests to prove this so we had to start taking blood work at specific hours to make sure it was the exact time each time, same labs etc) That is why I think if people have Thyroid issues and go on LDN- just give LDN a go because sometimes LDN just "adjusts" peoples thyroid values.Anyway, there was this difficult time because my normal prescribing LDN doc her hours were cut down at the office. So I saw a different doc and he did not know my level of sensitivity. Anyway, he upped my dosage too quick during this adjustment phase.. During this time my bowel started getting miraculously better.. Like just amazing leaps and bounds.This doc having interviewed world renowned Lyme docs from Columbia Pres saw my Lyme results and was basically "Jodi, this is very real I want you enrolled in their program" I spoke to them and they wanted like $10,000 and maybe insurance would cover it.. I nearly passed out. I decided I am not going to pay that amount to be told I have something and this is the extent of it. I decided I rather put my resources into alternative care because I cannot take long term antibiotics due to getting C Diff when I try. Which in turn makes the Crohn's worse.The general idea Ann is that if you are sensitive and experience certain symptoms IE joint issues one should just start at a small dosage as sometimes joint issues can temporarily get worse for *some* people and then get better (mostly people with MS). This does not happen all the time. I spoke to some LDN'ers about this stuff because at the time I was trying to figure out things for myself. If your joint issues are caused by the Crohn's the LDN will take care of this.LDN can help isolate why we have some long term problems. Like Lyme Disease and or co-infections. . Sleep Apnea if people aren't responding for pain management. Systemic Candida issues etc.It really is a wonder drug and IMO it's such a major discovery. It is however a threat to Big Pharma as Naltrexone is generic (no patent) and so serious money is not made like the new generation biologics etc.I am confident it will help you. Take it slow. Even if you have to wait a couple of weeks between each increase of doses.If I knew my Lyme issues were totally eradicated I would go back on LDN in a heartbeat. Jodi Find local businesses and services in your area with Yahoo!7 Local. Get started. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Hi Ann, My dad has been on LDN since the start of May for Hashimotos, Fibromyalgia and Celiac disease. At that time he was taking 125mcg of oroxine. By the start of August he had no hyper symptoms. The earliest I have heard of for a person needing to drop there dosage down has been 4 months. At the start of August I read a book called Stop The Thyroid Madness. I realised most of the symptoms that I thought were from his fibromyalgia were actually symptoms of his thyroid medication not working properly. So he has spent the last 2 weeks swapping over to desiccated thyroid (Naturethroid). We are going by his ft3 and ft4 levels from now on. Not by the tsh. We are doing this all on our own but we get wonderful support from the yahoo groups including this one. Before LDN dad was on fentanyl patches for his pain but he no longer takes it. I would say that his tiredness has not gone away but I think that has more to do with thyroid and just changing medications looks like it is helping. My dad is going to keep taking LDN for the rest of his life.He tells anyone that listens to get on it. Sky To: BTVC-SCD Sent: Wednesday, 19 August, 2009 12:08:58 AMSubject: Re: Re: OT- LDN in Italy Wow Jodi, that's quite a recommendation. I have Hashimoto's for which I take T4 tabs and T3 drops, I still feel like it's on the low side though, you think this will fix that? Should I do a blood test before I start the LDN? And then do one every month or so? Because I have Hashimoto's all the blood work is free. I'm sure my joint pain is related to the Crohn's because before SCD there were times I couln't walk and had to remain in bed. It always occured with a flare-up or just after a flare-up. Since SCD, now over 1 year, I have never been bed ridden and have never had a flare-up. What I have is constant, annoying aching in the muscles now, which could be the hypothyroid. The serious debilitating joint pain is gone with the Crohn's (Thank you Elaine!!!) I'm hoping that with LDN I will gain energy, sleep better and end the muscle pain. Last night I had to get up at 3am and do stretching just to get my muscles to settle down so I could sleep. I could have sleep apnea but this same neuro told me I didn't because I wasn't fat enough!! (I'm 15 lbs overweight) He said I didn't want to sleep overnight in the hospital and have those tests. Actuallly I would like to have it. My son says I snort really loud and scary when I sleep, he can hear it in the next room and it wakes him up. Doctors can be such a block to good health LOL Ann, Living in Italy Undiagnosed Crohn's since 1977 Diagnosed 15 years Sacroiliitis 25 years Rheumatoid arthritis 25 years Pyoderma Gangronosum 2 years SCD since July, 2008 Meds: None From: jodah235 <jodah235 (AT) yahoo (DOT) com>To: BTVC-SCD@yahoogroup s.comSent: Tuesday, August 18, 2009 3:27:31 PMSubject: Re: OT- LDN in Italy Hi Ann,I took LDN for a while. Then I got off of it for ileocolic resection. I needed to be on pain medication and anesthesia.I had a hard time with LDN... It was miraculous for my bowel. Before I started there was question if I have Long term Lyme Disease and co-infections. I was skeptical about this. I have had many names of illnesses thrown at me over the years. I had blood tests come back positive for Co-Infections but if you read the literature about this it is highly confusing and esoteric like. Anyway, I started LDN and physically my muscular skeletal system and neurological system just went cuckoo, later I learned that my increase in symptoms were exactly what those coinfections cause. So did my Thyroid values- It went up and down, up and down (have many blood tests to prove this so we had to start taking blood work at specific hours to make sure it was the exact time each time, same labs etc) That is why I think if people have Thyroid issues and go on LDN- just give LDN a go because sometimes LDN just "adjusts" peoples thyroid values.Anyway, there was this difficult time because my normal prescribing LDN doc her hours were cut down at the office. So I saw a different doc and he did not know my level of sensitivity. Anyway, he upped my dosage too quick during this adjustment phase.. During this time my bowel started getting miraculously better.. Like just amazing leaps and bounds.This doc having interviewed world renowned Lyme docs from Columbia Pres saw my Lyme results and was basically "Jodi, this is very real I want you enrolled in their program" I spoke to them and they wanted like $10,000 and maybe insurance would cover it.. I nearly passed out. I decided I am not going to pay that amount to be told I have something and this is the extent of it. I decided I rather put my resources into alternative care because I cannot take long term antibiotics due to getting C Diff when I try. Which in turn makes the Crohn's worse.The general idea Ann is that if you are sensitive and experience certain symptoms IE joint issues one should just start at a small dosage as sometimes joint issues can temporarily get worse for *some* people and then get better (mostly people with MS). This does not happen all the time. I spoke to some LDN'ers about this stuff because at the time I was trying to figure out things for myself. If your joint issues are caused by the Crohn's the LDN will take care of this.LDN can help isolate why we have some long term problems. Like Lyme Disease and or co-infections. . Sleep Apnea if people aren't responding for pain management. Systemic Candida issues etc.It really is a wonder drug and IMO it's such a major discovery. It is however a threat to Big Pharma as Naltrexone is generic (no patent) and so serious money is not made like the new generation biologics etc.I am confident it will help you. Take it slow. Even if you have to wait a couple of weeks between each increase of doses.If I knew my Lyme issues were totally eradicated I would go back on LDN in a heartbeat. Jodi Find local businesses and services in your area with Yahoo!7 Local. Get started. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 Hi Sky, Thanks for all that info. I just had my thyroid levels tested so I can keep an eye on any changes. How often did he check his levels? I assume he had hyper not hypo thyroid? I think my pain is also from the thyroid but not sure. I have hypo and I've asked doctors and pharmasists about natural thyroid and they don't know what I'm talking about. Does he stay in the mid range of his t3 and t4 or upper? I'm in the lower end of both, but t3 was lower than t4 so I now take t3 as well. I had my first dose of LDN 1.5 mg last night and sleep all night through. First time in years that I haven't woken up at 3am!! So far, so good. Ann, Living in Italy Undiagnosed Crohn's since 1977 Diagnosed 15 years Sacroiliitis 25 years Rheumatoid arthritis 25 years Pyoderma Gangronosum 2 years SCD since July, 2008 Meds: None To: BTVC-SCD Sent: Wednesday, August 19, 2009 3:25:56 AMSubject: Re: Re: OT- LDN in Italy Hi Ann, My dad has been on LDN since the start of May for Hashimotos, Fibromyalgia and Celiac disease. At that time he was taking 125mcg of oroxine. By the start of August he had no hyper symptoms. The earliest I have heard of for a person needing to drop there dosage down has been 4 months. At the start of August I read a book called Stop The Thyroid Madness. I realised most of the symptoms that I thought were from his fibromyalgia were actually symptoms of his thyroid medication not working properly. So he has spent the last 2 weeks swapping over to desiccated thyroid (Naturethroid) . We are going by his ft3 and ft4 levels from now on. Not by the tsh. We are doing this all on our own but we get wonderful support from the yahoo groups including this one. Before LDN dad was on fentanyl patches for his pain but he no longer takes it. I would say that his tiredness has not gone away but I think that has more to do with thyroid and just changing medications looks like it is helping. My dad is going to keep taking LDN for the rest of his life.He tells anyone that listens to get on it. Sky From: Shirley Ann <annscd08 (AT) yahoo (DOT) com>To: BTVC-SCD@yahoogroup s.comSent: Wednesday, 19 August, 2009 12:08:58 AMSubject: Re: Re: OT- LDN in Italy Wow Jodi, that's quite a recommendation. I have Hashimoto's for which I take T4 tabs and T3 drops, I still feel like it's on the low side though, you think this will fix that? Should I do a blood test before I start the LDN? And then do one every month or so? Because I have Hashimoto's all the blood work is free. I'm sure my joint pain is related to the Crohn's because before SCD there were times I couln't walk and had to remain in bed. It always occured with a flare-up or just after a flare-up. Since SCD, now over 1 year, I have never been bed ridden and have never had a flare-up. What I have is constant, annoying aching in the muscles now, which could be the hypothyroid. The serious debilitating joint pain is gone with the Crohn's (Thank you Elaine!!!) I'm hoping that with LDN I will gain energy, sleep better and end the muscle pain. Last night I had to get up at 3am and do stretching just to get my muscles to settle down so I could sleep. I could have sleep apnea but this same neuro told me I didn't because I wasn't fat enough!! (I'm 15 lbs overweight) He said I didn't want to sleep overnight in the hospital and have those tests. Actuallly I would like to have it. My son says I snort really loud and scary when I sleep, he can hear it in the next room and it wakes him up. Doctors can be such a block to good health LOL Ann, Living in Italy Undiagnosed Crohn's since 1977 Diagnosed 15 years Sacroiliitis 25 years Rheumatoid arthritis 25 years Pyoderma Gangronosum 2 years SCD since July, 2008 Meds: None From: jodah235 <jodah235 (AT) yahoo (DOT) com>To: BTVC-SCD@yahoogroup s.comSent: Tuesday, August 18, 2009 3:27:31 PMSubject: Re: OT- LDN in Italy Hi Ann,I took LDN for a while. Then I got off of it for ileocolic resection. I needed to be on pain medication and anesthesia.I had a hard time with LDN... It was miraculous for my bowel. Before I started there was question if I have Long term Lyme Disease and co-infections. I was skeptical about this. I have had many names of illnesses thrown at me over the years. I had blood tests come back positive for Co-Infections but if you read the literature about this it is highly confusing and esoteric like. Anyway, I started LDN and physically my muscular skeletal system and neurological system just went cuckoo, later I learned that my increase in symptoms were exactly what those coinfections cause. So did my Thyroid values- It went up and down, up and down (have many blood tests to prove this so we had to start taking blood work at specific hours to make sure it was the exact time each time, same labs etc) That is why I think if people have Thyroid issues and go on LDN- just give LDN a go because sometimes LDN just "adjusts" peoples thyroid values.Anyway, there was this difficult time because my normal prescribing LDN doc her hours were cut down at the office. So I saw a different doc and he did not know my level of sensitivity. Anyway, he upped my dosage too quick during this adjustment phase.. During this time my bowel started getting miraculously better.. Like just amazing leaps and bounds.This doc having interviewed world renowned Lyme docs from Columbia Pres saw my Lyme results and was basically "Jodi, this is very real I want you enrolled in their program" I spoke to them and they wanted like $10,000 and maybe insurance would cover it.. I nearly passed out. I decided I am not going to pay that amount to be told I have something and this is the extent of it. I decided I rather put my resources into alternative care because I cannot take long term antibiotics due to getting C Diff when I try. Which in turn makes the Crohn's worse.The general idea Ann is that if you are sensitive and experience certain symptoms IE joint issues one should just start at a small dosage as sometimes joint issues can temporarily get worse for *some* people and then get better (mostly people with MS). This does not happen all the time. I spoke to some LDN'ers about this stuff because at the time I was trying to figure out things for myself. If your joint issues are caused by the Crohn's the LDN will take care of this.LDN can help isolate why we have some long term problems. Like Lyme Disease and or co-infections. . Sleep Apnea if people aren't responding for pain management. Systemic Candida issues etc.It really is a wonder drug and IMO it's such a major discovery. It is however a threat to Big Pharma as Naltrexone is generic (no patent) and so serious money is not made like the new generation biologics etc.I am confident it will help you. Take it slow. Even if you have to wait a couple of weeks between each increase of doses.If I knew my Lyme issues were totally eradicated I would go back on LDN in a heartbeat. Jodi Find local businesses and services in your area with Yahoo!7 Local. Get started. Quote Link to comment Share on other sites More sharing options...
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