Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 PJ, can I ask what dose of LDN you are taking and how long you’ve been taking it? Sorry, I’m fairly new to the group and have a lot of catching up to do. Perhaps I can help but need to know the above. Many thanks, Jayne Crocker www.LDNNow.com Important! Please sign our LDN petition to the European Parliament by clicking here tel: +44 (0) 7877 492 669 Dr Steele MBE, talking about LDN LDNNow are a political/pressure group of individuals dedicated to getting Low Dose Naltrexone (LDN) accepted into modern medicine and trialled for the myriad of uses it shows benefit for. .. From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of smdsmom2008 Sent: 10 September 2010 15:16 To: BTVC-SCD Subject: LDN question Thanks to everyone for the support. Is it possible for LDN to stop working? I take it in the am for sleeplessness. I recently started a light excerize class- Jazzercise- about 3 mornings a week. I know heavy work outs can bring on a flare, but this is light and I go at my own pace. I like the social/mental health benefits of seeing friends there and moving to the music gives me a lift. I know LDN blocks the receptors, but is it possible I am interferring with it? I would hate to stop as I really look forward to it. I also know about yeast and I am cutting down on carbs, adding coconut oil.. Thanks, PJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 4.5 mg skin cream in am. Taking it at night kept me up for weeks. I sleep well now. PJ > > PJ, can I ask what dose of LDN you are taking and how long you've been > taking it? Sorry, I'm fairly new to the group and have a lot of catching up > to do. > > > > Perhaps I can help but need to know the above. > > > > Many thanks, > > > > Jayne Crocker > > LDNNow logo the one to use > > > > www.LDNNow.com > > <http://www.ipetitions.com/petition/ldnnow/> Important! Please sign our > LDN petition to the European Parliament by clicking here > > tel: +44 (0) 7877 492 669 > > < Dr Steele MBE, talking > about LDN > > LDNNow are a political/pressure group of individuals dedicated to getting > Low Dose Naltrexone (LDN) accepted into modern medicine and trialled for the > myriad of uses it shows benefit for. > > . > > > > From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf > Of smdsmom2008 > Sent: 10 September 2010 15:16 > To: BTVC-SCD > Subject: LDN question > > > > > > Thanks to everyone for the support. Is it possible for LDN to stop working? > I take it in the am for sleeplessness. I recently started a light excerize > class- Jazzercise- about 3 mornings a week. I know heavy work outs can bring > on a flare, but this is light and I go at my own pace. I like the > social/mental health benefits of seeing friends there and moving to the > music gives me a lift. I know LDN blocks the receptors, but is it possible I > am interferring with it? > > I would hate to stop as I really look forward to it. > > I also know about yeast and I am cutting down on carbs, adding coconut oil.. > > Thanks, > PJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 oh also for about a year- started with 1.5 mg and worked up. PJ One reason I wondered if it was not working well is that I get tipsy on only one glass of wine because I never drink it much. When I started LDN I noticed that I did not get tipsy, but the last time I ha a glass of wine- a while back- I got tipsy again. PJ > > > > PJ, can I ask what dose of LDN you are taking and how long you've been > > taking it? Sorry, I'm fairly new to the group and have a lot of catching up > > to do. > > > > > > > > Perhaps I can help but need to know the above. > > > > > > > > Many thanks, > > > > > > > > Jayne Crocker > > > > LDNNow logo the one to use > > > > > > > > www.LDNNow.com > > > > <http://www.ipetitions.com/petition/ldnnow/> Important! Please sign our > > LDN petition to the European Parliament by clicking here > > > > tel: +44 (0) 7877 492 669 > > > > < Dr Steele MBE, talking > > about LDN > > > > LDNNow are a political/pressure group of individuals dedicated to getting > > Low Dose Naltrexone (LDN) accepted into modern medicine and trialled for the > > myriad of uses it shows benefit for. > > > > . > > > > > > > > From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf > > Of smdsmom2008 > > Sent: 10 September 2010 15:16 > > To: BTVC-SCD > > Subject: LDN question > > > > > > > > > > > > Thanks to everyone for the support. Is it possible for LDN to stop working? > > I take it in the am for sleeplessness. I recently started a light excerize > > class- Jazzercise- about 3 mornings a week. I know heavy work outs can bring > > on a flare, but this is light and I go at my own pace. I like the > > social/mental health benefits of seeing friends there and moving to the > > music gives me a lift. I know LDN blocks the receptors, but is it possible I > > am interferring with it? > > > > I would hate to stop as I really look forward to it. > > > > I also know about yeast and I am cutting down on carbs, adding coconut oil.. > > > > Thanks, > > PJ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 OK Thanks. Perhaps I can share with the group that I suffer from UC and have been on LDN since Nov 2008. I recently had a flare up in June 2010 and was absolutely baffled by this. I’ve been focussing on the shift from TH1 to TH2 cells and vice versa. However, my GP whom I met with yesterday explained that Naltrexone does lower your platelet count. I didn’t know/realise this. He wants my platelet count back up to 150 so has asked me to come off the LDN for a while. He has nothing against LDN, in fact he supports it. He thinks for someone like myself taking 2mg every other day would be better than 3mg daily. I have to agree with him ie some times less is more. You may be interested in this sent by Dr Zagon:- My recommendation years ago is to stay as low as you can. The 4.5 mg grew out of physicians who advocated it - without depth of knowledge - and it came out of my recommendations originally of 3-10 mg based on our studies in the lab and human pharmacokinetic studies (see our original patents in 1982-1983). Jayne Crocker www.LDNNow.com Important! Please sign our LDN petition to the European Parliament by clicking here tel: +44 (0) 7877 492 669 Dr Steele MBE, talking about LDN LDNNow are a political/pressure group of individuals dedicated to getting Low Dose Naltrexone (LDN) accepted into modern medicine and trialled for the myriad of uses it shows benefit for. .. From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of smdsmom2008 Sent: 10 September 2010 15:32 To: BTVC-SCD Subject: Re: LDN question 4.5 mg skin cream in am. Taking it at night kept me up for weeks. I sleep well now. PJ > > PJ, can I ask what dose of LDN you are taking and how long you've been > taking it? Sorry, I'm fairly new to the group and have a lot of catching up > to do. > > > > Perhaps I can help but need to know the above. > > > > Many thanks, > > > > Jayne Crocker > > LDNNow logo the one to use > > > > www.LDNNow.com > > <http://www.ipetitions.com/petition/ldnnow/> Important! Please sign our > LDN petition to the European Parliament by clicking here > > tel: +44 (0) 7877 492 669 > > < Dr Steele MBE, talking > about LDN > > LDNNow are a political/pressure group of individuals dedicated to getting > Low Dose Naltrexone (LDN) accepted into modern medicine and trialled for the > myriad of uses it shows benefit for. > > . > > > > From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf > Of smdsmom2008 > Sent: 10 September 2010 15:16 > To: BTVC-SCD > Subject: LDN question > > > > > > Thanks to everyone for the support. Is it possible for LDN to stop working? > I take it in the am for sleeplessness. I recently started a light excerize > class- Jazzercise- about 3 mornings a week. I know heavy work outs can bring > on a flare, but this is light and I go at my own pace. I like the > social/mental health benefits of seeing friends there and moving to the > music gives me a lift. I know LDN blocks the receptors, but is it possible I > am interferring with it? > > I would hate to stop as I really look forward to it. > > I also know about yeast and I am cutting down on carbs, adding coconut oil.. > > Thanks, > PJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 Interesting as I recently went up from 3.6 to 4.5 thinking it would help. Maybe I need to back down again. I'm about 125 pounds. My doctor has no idea I'm taking it- he would not be supportive. I wish I had more support from my doctors here- but I don't. PJ > > > > PJ, can I ask what dose of LDN you are taking and how long you've been > > taking it? Sorry, I'm fairly new to the group and have a lot of catching > up > > to do. > > > > > > > > Perhaps I can help but need to know the above. > > > > > > > > Many thanks, > > > > > > > > Jayne Crocker > > > > LDNNow logo the one to use > > > > > > > > www.LDNNow.com > > > > <http://www.ipetitions.com/petition/ldnnow/> Important! Please sign our > > LDN petition to the European Parliament by clicking here > > > > tel: +44 (0) 7877 492 669 > > > > < Dr Steele MBE, talking > > about LDN > > > > LDNNow are a political/pressure group of individuals dedicated to getting > > Low Dose Naltrexone (LDN) accepted into modern medicine and trialled for > the > > myriad of uses it shows benefit for. > > > > . > > > > > > > > From: BTVC-SCD <mailto:BTVC-SCD%40yahoogroups.com> > [mailto:BTVC-SCD <mailto:BTVC-SCD%40yahoogroups.com> ] On > Behalf > > Of smdsmom2008 > > Sent: 10 September 2010 15:16 > > To: BTVC-SCD <mailto:BTVC-SCD%40yahoogroups.com> > > Subject: LDN question > > > > > > > > > > > > Thanks to everyone for the support. Is it possible for LDN to stop > working? > > I take it in the am for sleeplessness. I recently started a light excerize > > class- Jazzercise- about 3 mornings a week. I know heavy work outs can > bring > > on a flare, but this is light and I go at my own pace. I like the > > social/mental health benefits of seeing friends there and moving to the > > music gives me a lift. I know LDN blocks the receptors, but is it possible > I > > am interferring with it? > > > > I would hate to stop as I really look forward to it. > > > > I also know about yeast and I am cutting down on carbs, adding coconut > oil.. > > > > Thanks, > > PJ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 PJ, that sounds a good idea. However, my GP won’t prescribe LDN for me, I get this from Dr Bob Lawrence. My GP has explained that his hands are tied and until the Govt give it the green light, there’s not a lot he can do. However, he has agreed to work with me and monitor me on all of this. I was exactly like yourself ie my Dr doesn’t know, he won’t like it. In fact, I was wrong. Jayne Crocker www.LDNNow.com Important! Please sign our LDN petition to the European Parliament by clicking here tel: +44 (0) 7877 492 669 Dr Steele MBE, talking about LDN LDNNow are a political/pressure group of individuals dedicated to getting Low Dose Naltrexone (LDN) accepted into modern medicine and trialled for the myriad of uses it shows benefit for. .. From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of smdsmom2008 Sent: 10 September 2010 15:45 To: BTVC-SCD Subject: Re: LDN question Interesting as I recently went up from 3.6 to 4.5 thinking it would help. Maybe I need to back down again. I'm about 125 pounds. My doctor has no idea I'm taking it- he would not be supportive. I wish I had more support from my doctors here- but I don't. PJ > > > > PJ, can I ask what dose of LDN you are taking and how long you've been > > taking it? Sorry, I'm fairly new to the group and have a lot of catching > up > > to do. > > > > > > > > Perhaps I can help but need to know the above. > > > > > > > > Many thanks, > > > > > > > > Jayne Crocker > > > > LDNNow logo the one to use > > > > > > > > www.LDNNow.com > > > > <http://www.ipetitions.com/petition/ldnnow/> Important! Please sign our > > LDN petition to the European Parliament by clicking here > > > > tel: +44 (0) 7877 492 669 > > > > < Dr Steele MBE, talking > > about LDN > > > > LDNNow are a political/pressure group of individuals dedicated to getting > > Low Dose Naltrexone (LDN) accepted into modern medicine and trialled for > the > > myriad of uses it shows benefit for. > > > > . > > > > > > > > From: BTVC-SCD <mailto:BTVC-SCD%40yahoogroups.com> > [mailto:BTVC-SCD <mailto:BTVC-SCD%40yahoogroups.com> ] On > Behalf > > Of smdsmom2008 > > Sent: 10 September 2010 15:16 > > To: BTVC-SCD <mailto:BTVC-SCD%40yahoogroups.com> > > Subject: LDN question > > > > > > > > > > > > Thanks to everyone for the support. Is it possible for LDN to stop > working? > > I take it in the am for sleeplessness. I recently started a light excerize > > class- Jazzercise- about 3 mornings a week. I know heavy work outs can > bring > > on a flare, but this is light and I go at my own pace. I like the > > social/mental health benefits of seeing friends there and moving to the > > music gives me a lift. I know LDN blocks the receptors, but is it possible > I > > am interferring with it? > > > > I would hate to stop as I really look forward to it. > > > > I also know about yeast and I am cutting down on carbs, adding coconut > oil.. > > > > Thanks, > > PJ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 > Thanks to everyone for the support. Is it possible for LDN to stop working? I take it in the am for sleeplessness. I recently started a light excerize class- Jazzercise- about 3 mornings a week. I know heavy work outs can bring on a flare, but this is light and I go at my own pace. I like the social/mental health benefits of seeing friends there and moving to the music gives me a lift. I know LDN blocks the receptors, but is it possible I am interferring with it? <g> Not with exercise. Just the reverse - you are creating your own endorphins and helping it along. I feel much better with exercise. In fact, I feel my body needs it to stay well, at peak. You might want to shift the time you are taking LDN however, so you can get endorphins - not exercise while you are blocking your receptors as that is counterproductive physically. That is, if you are still taking it in the morning. Maybe it is confusing your body. Though if you are getting a lift something good chemically is taking place already. but it is also the fall and the winds and pollens have changed - I know I've gotten a few sinus headaches lately and related symptoms - this may be how your body processes fall allergens/ molds/spores/pollens as Dana already pointed out. I agree with Amelia - to give yourself a day or two off to let your body heal and de-stress. > > I would hate to stop as I really look forward to it. > > > I also know about yeast and I am cutting down on carbs, adding coconut oil.. s. boulardii. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 You may be interested in this – written by Janet – LDNNow http://www.ldnnow.co.uk/8601.html?entryId=b396359dfe7b5d9d72ddac630fb161bb Jayne Crocker www.LDNNow.com Important! Please sign our LDN petition to the European Parliament by clicking here tel: +44 (0) 7877 492 669 Dr Steele MBE, talking about LDN LDNNow are a political/pressure group of individuals dedicated to getting Low Dose Naltrexone (LDN) accepted into modern medicine and trialled for the myriad of uses it shows benefit for. .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 A virus can do this too, so I hope you are OK. PJ > > > > OK Thanks. Perhaps I can share with the group that I suffer from UC and > > have been on LDN since Nov 2008. I recently had a flare up in June 2010 and > > was absolutely baffled by this. I've been focussing on the shift from TH1 > > to TH2 cells and vice versa. However, my GP whom I met with yesterday > > explained that Naltrexone does lower your platelet count. I didn't > > know/realise this. He wants my platelet count back up to 150 so has asked > > me to come off the LDN for a while. He has nothing against LDN, in fact he > > supports it. He thinks for someone like myself taking 2mg every other day > > would be better than 3mg daily. I have to agree with him ie some times less > > is more. You may be interested in this sent by Dr Zagon:- > > > > > > > > My recommendation years ago is to stay as low as you can. The 4.5 mg grew > > out of physicians who advocated it - without depth of knowledge - and it > > came out of my recommendations originally of 3-10 mg based on our studies in > > the lab and human pharmacokinetic studies (see our original patents in > > 1982-1983). > > > > > > > > Jayne Crocker > > > > LDNNow logo the one to use > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2010 Report Share Posted September 10, 2010 And not even much of a virus. Some years ago my doctor called me in some agitation about my platelets. He sent me downtown to a Hematologist to find out about dire things and I got to think about that while waiting amongst all the sad chemo patients and all. It turned out there was nothing wrong except I had gotten the blood drawn just before I started knowing I was catching a cold, but boy, that test was WAY off. He had me do a repeat and all was well. A virus can do this too, so I hope you are OK. PJ > > That is really interesting about the platelets! I have had a " rash " on the back of my hands for a month or two. It basically looks like freckles, except a little more red. It's started to spread down my arms now, and on my legs too. Upon doing some research, I found that it is most likely Petechia. And guess what one of the causes is...low platelets. I just had blood work done a couple days ago, so I'll find out next week if this is it. I'd hate to quit taking LDN, but I guess you gotta do what you gotta do :-(. > > Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2010 Report Share Posted September 11, 2010 Thanks PJ :-). I've had this rash in the past, and thought it was caused by a virus. However, it always went away within a few days. This one is sticking around for a long time. I feel okay for the most part, so I'm trying not worry about it too much. Holly Crohn's SCD 12/01/08 > > > > That is really interesting about the platelets! I have had a " rash " on the back of my hands for a month or two. It basically looks like freckles, except a little more red. It's started to spread down my arms now, and on my legs too. Upon doing some research, I found that it is most likely Petechia. And guess what one of the causes is...low platelets. I just had blood work done a couple days ago, so I'll find out next week if this is it. I'd hate to quit taking LDN, but I guess you gotta do what you gotta do :-(. > > > > Holly > > Crohn's > > SCD 12/01/08 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2010 Report Share Posted September 11, 2010 Thanks Holly this is why I personally think Dr Zagon has always been the one saying take 3mg and some even benefit on less – LDN can build up in your system and therefore people are saying it has stopped working. He’s very cautious of this. Like you I didn’t want to come off LDN, not one bit – perhaps for me I would have benefitted more on 2mg. So I’m hoping after the break I can resume. I have more blood work in 12 days time so will share what the results are then. However, I see a lot of us here are or have been taking prednisone and one thing I’d like to share with the group is I got this email from Dr Jill (LDN ‘expert’ for Crohns). She suggested if we do need to go on steroids, perhaps this is something that would be an option. I hope you find this helpful. Unfortunately all trials for Crohns has been done with 4.5mg, I wonder what the trials would say if people were given 3mg or less? Do you have budesomide in UK so you can avild the side effects of the presnione and less suppression on the immune cells? Also during flares we have found that people with snall bowle Crohn's do not sbsorb oral naltrexone as well from the duodenum so I sometime switch to a topicl cream at bedtime and pateints rub it on their skin (same dose 4.5 mg) Hope this helps. Jayne Crocker www.LDNNow.com Important! Please sign our LDN petition to the European Parliament by clicking here tel: +44 (0) 7877 492 669 Dr Steele MBE, talking about LDN LDNNow are a political/pressure group of individuals dedicated to getting Low Dose Naltrexone (LDN) accepted into modern medicine and trialled for the myriad of uses it shows benefit for. .. > > > > > That is really interesting about the platelets! I have had a " rash " on the back of my hands for a month or two. It basically looks like freckles, except a little more red. It's started to spread down my arms now, and on my legs too. Upon doing some research, I found that it is most likely Petechia. And guess what one of the causes is...low platelets. I just had blood work done a couple days ago, so I'll find out next week if this is it. I'd hate to quit taking LDN, but I guess you gotta do what you gotta do :-(. > > > > Holly > > Crohn's > > SCD 12/01/08 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2010 Report Share Posted September 11, 2010 I've been taking 3 MG of liquid LDN (I make my own from the 50MG tabs) every night (I weight a little over 100 pounds). Last night I skipped it, and will take 3 MG a night until I find out my platelet numbers next week. I may even experiment with 2 MG every other night. Thanks very much for the information Jane! Since my doctors aren't involved with my taking this med, I'm kind of flying by the seat of my pants ;-). Holly Crohn's SCD 12/01/08 > > Thanks Holly this is why I personally think Dr Zagon has always been the one > saying take 3mg and some even benefit on less - LDN can build up in your > system and therefore people are saying it has stopped working. He's very > cautious of this. > > > > Like you I didn't want to come off LDN, not one bit - perhaps for me I would > have benefitted more on 2mg. So I'm hoping after the break I can resume. I > have more blood work in 12 days time so will share what the results are > then. > > > > However, I see a lot of us here are or have been taking prednisone and one > thing I'd like to share with the group is I got this email from Dr Jill > (LDN 'expert' for Crohns). She suggested if we do need to go on > steroids, perhaps this is something that would be an option. I hope you > find this helpful. Unfortunately all trials for Crohns has been done with > 4.5mg, I wonder what the trials would say if people were given 3mg or less? > > > > Do you have budesomide in UK so you can avild the side effects of the > presnione and less suppression on the immune cells? > > Also during flares we have found that people with snall bowle Crohn's do not > sbsorb oral naltrexone as well from the duodenum so I sometime switch to a > topicl cream at bedtime and pateints rub it on their skin (same dose 4.5 mg) > > Hope this helps. > > > > > > Jayne Crocker > > LDNNow logo the one to use > > > > www.LDNNow.com > Quote Link to comment Share on other sites More sharing options...
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