Guest guest Posted March 21, 2011 Report Share Posted March 21, 2011 I have not yet done AP, but have been on LDN for about 15months. It is a mild to moderate improvement, but since it is a safe, no hassle and cheap drug, I'll take it. I do notice a difference after going off LDN for a few days, and am not on a special diet right now. I 'm sure if I went gluten and dairy free as many others are doing, it would be even better. Gluten can act as an opiate in some who are sensitive, cancelling out the LDN effect of a short term opiate antagonist. I have psoriatic arthritis though. Kinga rheumatic AP and LDN for RA?? Who Has RA and is trying AP and LDN?? would like to hear from you.. I have been doing the AP for about one month, (Doxycycline 100mg M-W-F) still have some inflammation, in my wrist and fingers ,but no flares! Yay! would like to start LDN to improve on this... any advice would be helpful Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2011 Report Share Posted March 21, 2011 Carol, I started to take LDN September 2009 till July 2010, had to stop for hip surgery and after that for dental procedures. I am back on it again I have RA and Dermatomyositis. LDN really helped a lot even with DM. I could hardly stand upright, now I am 80 % better. Never will be the same since RA fused the bottom 5 vertabreas together and now I have scoliosis of the lower back. I sleep a lot better and have more energy. Eva From: Carole <Ciegiea@...> Subject: rheumatic AP and LDN for RA?? rheumatic Date: Monday, March 21, 2011, 6:55 PM Â Who Has RA and is trying AP and LDN?? would like to hear from you.. I have been doing the AP for about one month, (Doxycycline 100mg M-W-F) still have some inflammation, in my wrist and fingers ,but no flares! Yay! would like to start LDN to improve on this... any advice would be helpful Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 I stopped AP 3 years ago on the advice of my AP doctor, she told me to start Enbrel which I reluctantly did. I started LDN in November, it has helped me considerably....although I'm in a terrible flare now so I'm wondering if the LDN has run it's course. I would try it, I'm glad that I did. Sue ---- Carole <Ciegiea@...> wrote: > Who Has RA and is trying AP and LDN?? would like to hear from you.. I have been doing the AP for about one month, (Doxycycline 100mg M-W-F) still have some inflammation, in my wrist and fingers ,but no flares! Yay! would like to start LDN to improve on this... any advice would be helpful Thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 Sue, LDN is a long-term medicine to take. Maybe you if you go back to the AP maybe that would help. Sorry you are in a flare. Hope something works for you. Eva > Who Has RA and is trying AP and LDN?? would like to hear from you.. I have been doing the AP for about one month, (Doxycycline 100mg M-W-F) still have some inflammation, in my wrist and fingers ,but no flares! Yay! would like to start LDN to improve on this... any advice would be helpful Thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 Sue, how long were you on AP? Do you think Enbrel is helping? When I use to go to Rhemy, she wanted me on Methotrexate, Enbrel and another " cocktail " I went home and read about each one and never went back to Rhemy. That was almost 3 years ago....and here I am still at home and now walker (because of my hips) I often wonder if my life would be different (for the better) had I taken the drugs....yet, know there would be ongoing not so good. It's sort of like your chocolate thing ... if this is the way our life is going to be, then go for the chocolate (drugs) I know that AP can be a long rough journey. Having RA and if I were on the drugs, I don't even think " remission " would be a word I would hear. Being on this site with people on AP.....I hear remission quite often. I sure don't know how long my life is going to be here, but I must say, each year with this goes by faster and faster. I know these thoughts and concerns are with everyone on this site looking for help and answers. Everything I read/have read, the AP path makes sense to me on all levels. I still have hope and faith, that in this world collapsing as we know it, that once the dust settles...........answers and solutions will be available to all of us with these diseases. Sally Re: rheumatic AP and LDN for RA?? I stopped AP 3 years ago on the advice of my AP doctor, she told me to start Enbrel which I reluctantly did. I started LDN in November, it has helped me considerably....although I'm in a terrible flare now so I'm wondering if the LDN has run it's course. I would try it, I'm glad that I did. Sue ---- Carole <Ciegiea@...> wrote: > Who Has RA and is trying AP and LDN?? would like to hear from you.. I have been doing the AP for about one month, (Doxycycline 100mg M-W-F) still have some inflammation, in my wrist and fingers ,but no flares! Yay! would like to start LDN to improve on this... any advice would be helpful Thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 Hi Sally, I had high hopes for AP and may go back to it when my boys are a little older. My two sons were young when I got RA and after struggling with 2 years, missing so much with them I had to bite the bullet and take the Enbrel. That was also on the advice of my AP doctor, I had too much inflammation she said the AP wasn't able to do it's thing. Yes it did help for awhile there, I think I'm coming to the end of that run though. There are terrible side effects, I already developed tinnitus, before you roll your eyes about that as so many people do, let me just say that given the choice of my horrible RA and tinnitus...I'd take RA so if that gives you any indication of how bad my tinnitus is. If I didn't have young children at the time of my RA I would have stayed the AP route so I think you are doing the right thing....it is very hard this RA thing. I wish you well. Sue ---- mannasal@... wrote: > Sue, how long were you on AP? Do you think Enbrel is helping? > When I use to go to Rhemy, she wanted me on Methotrexate, Enbrel and another " cocktail " I went home and read about each one and never went back to Rhemy. That was almost 3 years ago....and here I am still at home and now walker (because of my hips) I often wonder if my life would be different (for the better) had I taken the drugs....yet, know there would be ongoing not so good. It's sort of like your chocolate thing ... if this is the way our life is going to be, then go for the chocolate (drugs) I know that AP can be a long rough journey. Having RA and if I were on the drugs, I don't even think " remission " would be a word I would hear. Being on this site with people on AP.....I hear remission quite often. I sure don't know how long my life is going to be here, but I must say, each year with this goes by faster and faster. I know these thoughts and concerns are with everyone on this site looking for help and answers. Everything I read/have read, the AP path makes sense to me on all levels. I still have hope and faith, that in this world collapsing as we know it, that once the dust settles...........answers and solutions will be available to all of us with these diseases. Sally > > > > > Re: rheumatic AP and LDN for RA?? > > > > > > I stopped AP 3 years ago on the advice of my AP doctor, she told me to start Enbrel which I reluctantly did. I started LDN in November, it has helped me considerably....although I'm in a terrible flare now so I'm wondering if the LDN has run it's course. I would try it, I'm glad that I did. > > Sue > ---- Carole <Ciegiea@...> wrote: > > Who Has RA and is trying AP and LDN?? would like to hear from you.. I have been doing the AP for about one month, (Doxycycline 100mg M-W-F) still have some inflammation, in my wrist and fingers ,but no flares! Yay! would like to start LDN to improve on this... any advice would be helpful Thanks! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 Thanks for the Info Kinga, I will start the LDN soon and keep you posted on my progress, its so great to have acess to so many helpful people sharing , and getting thru all of this.. Thank you!!! > > I have not yet done AP, but have been on LDN for about 15months. It is a mild to moderate improvement, but since it is a safe, no hassle and cheap drug, I'll take it. I do notice a difference after going off LDN for a few days, and am not on a special diet right now. > I 'm sure if I went gluten and dairy free as many others are doing, it would be even better. Gluten can act as an opiate in some who are sensitive, cancelling out the LDN effect of a short term opiate antagonist. I have psoriatic arthritis though. > > Kinga > rheumatic AP and LDN for RA?? > > > > Who Has RA and is trying AP and LDN?? would like to hear from you.. I have been doing the AP for about one month, (Doxycycline 100mg M-W-F) still have some inflammation, in my wrist and fingers ,but no flares! Yay! would like to start LDN to improve on this... any advice would be helpful Thanks! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 Eve,. Thanks .. I am glad LDN is helping you! .. .. more energy would be a Blessing! .. Between the hypo thyroid, the copd, and now Ra I am very tired all of the time!! ..TODAY , I did awaken with more energy, and cleaned house! hope I dont PAY tomorrow! LOLOL will start LDN soon! and post my progress. Thanks!! > > From: Carole <Ciegiea@...> > Subject: rheumatic AP and LDN for RA?? > rheumatic > Date: Monday, March 21, 2011, 6:55 PM > > > > > > > > Â > > > > > > > > > > Who Has RA and is trying AP and LDN?? would like to hear from you.. I have been doing the AP for about one month, (Doxycycline 100mg M-W-F) still have some inflammation, in my wrist and fingers ,but no flares! Yay! would like to start LDN to improve on this... any advice would be helpful Thanks! > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 Hi folks, I hope this info will be of help to you to stay the course with the AP and get off of all immune suppressing drugs. I just returned from a 3 day floor curling tournament and the husband and wife team that have run this tournament every year for the past 8 years are now having to step down due to the wife's RA. She told me that she is on quite a few immune suppressing drugs prescribed by her rheumie to help her function with RA. Well this year the immune suppressing effect of these drugs has her having to quit her part in the organization of this tournie. She hopes to be able to continue to participate in this sport but is afraid of 'catching' something and is also getting weaker and starting to notice that her gait and strength is not what it used to be. The RA is progressing despite all the drugs she is taking. It is very important for the AP to work well to have a strong immune system so that our own bodies can get rid of the toxins that the minocin/doryx chases out of hiding. IMO the stronger our immunity is the better able we are to rid our bodies of the bacteria without having to suffer huge herxes. We are all different in our reactions so finding our own dosage by trial and error will most likely be necessary but in the long run we will be able to rid ourselves of our 'auto-immune' disease, what ever type we have, rather than just cover up the symptoms to be able to ''feel good'. I wish for all of you - patience, perseverance and a return to good health. take care and God Bless, Carol_DM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 Thank you for this message ! My RA symtoms started in Sept . after a bad bout with Bronchitis .. Diag. in Dec. with RA. got on pc an found AP so I am hopeful! > > Hi folks, > > I hope this info will be of help to you to stay the course with the AP and get off of all immune suppressing drugs. > > I just returned from a 3 day floor curling tournament and the husband and wife team that have run this tournament every year for the past 8 years are now having to step down due to the wife's RA. She told me that she is on quite a few immune suppressing drugs prescribed by her rheumie to help her function with RA. Well this year the immune suppressing effect of these drugs has her having to quit her part in the organization of this tournie. She hopes to be able to continue to participate in this sport but is afraid of 'catching' something and is also getting weaker and starting to notice that her gait and strength is not what it used to be. The RA is progressing despite all the drugs she is taking. > > It is very important for the AP to work well to have a strong immune system so that our own bodies can get rid of the toxins that the minocin/doryx chases out of hiding. IMO the stronger our immunity is the better able we are to rid our bodies of the bacteria without having to suffer huge herxes. We are all different in our reactions so finding our own dosage by trial and error will most likely be necessary but in the long run we will be able to rid ourselves of our 'auto-immune' disease, what ever type we have, rather than just cover up the symptoms to be able to ''feel good'. > > I wish for all of you - patience, perseverance and a return to good health. > > take care and God Bless, > > Carol_DM > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 Carol, I was like your friend, taking all the immune suppressing drugs and had to stop working and stayed in bed 20 hours a day. When I had this bad sinus infection my rheumy wouldn't even think about antibiotics so the next appointment with my pulmonary doctor I complained about the sinus infection and he wrote me a prescription for Biaxin, within a week I could tell the difference and looked up all the info on RA and Antibiotics and found the antibiotic protocol and even a doctor only 125 miles from my house and she was taking my health insurance and I have been on the AP since January 2008 and my blood work is very good the only thing slightly elevated is my ANA. But I am sticking to taking my meds every day that I have to take it. I also take supplements and two Probiotics. When I had to have my hip replaced and went to rehab I had my husband bring all my medication and they were willing to use the protocol. They did ask me why I used the antibiotics they way I did and I explained and they had no problem with it. I really appreciated that and it didn't cost me as much money for meds, because they would have charged the hospital rate and that is high. I always try to help people to see the difference between the immune suppressing meds and AP. Hopefully a few have been helped. I have seen a few people say after a few months that they don't see the cure yet. I tell them I had been sick for at least five years so getting well will take almost as much time. Some people can't understand that, Thanks, take care, Eva From: Bob & Carol Zarn <bczarn@...> Subject: rheumatic Re: AP and LDN for RA?? rheumatic Date: Friday, March 25, 2011, 12:13 AM  Hi folks, I hope this info will be of help to you to stay the course with the AP and get off of all immune suppressing drugs. I just returned from a 3 day floor curling tournament and the husband and wife team that have run this tournament every year for the past 8 years are now having to step down due to the wife's RA. She told me that she is on quite a few immune suppressing drugs prescribed by her rheumie to help her function with RA. Well this year the immune suppressing effect of these drugs has her having to quit her part in the organization of this tournie. She hopes to be able to continue to participate in this sport but is afraid of 'catching' something and is also getting weaker and starting to notice that her gait and strength is not what it used to be. The RA is progressing despite all the drugs she is taking. It is very important for the AP to work well to have a strong immune system so that our own bodies can get rid of the toxins that the minocin/doryx chases out of hiding. IMO the stronger our immunity is the better able we are to rid our bodies of the bacteria without having to suffer huge herxes. We are all different in our reactions so finding our own dosage by trial and error will most likely be necessary but in the long run we will be able to rid ourselves of our 'auto-immune' disease, what ever type we have, rather than just cover up the symptoms to be able to ''feel good'. I wish for all of you - patience, perseverance and a return to good health. take care and God Bless, Carol_DM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 A lovely message Carol....encouragement and hope that we are on the way to remission. THANK YOU! Sally rheumatic Re: AP and LDN for RA?? Hi folks, I hope this info will be of help to you to stay the course with the AP and get off of all immune suppressing drugs. I just returned from a 3 day floor curling tournament and the husband and wife team that have run this tournament every year for the past 8 years are now having to step down due to the wife's RA. She told me that she is on quite a few immune suppressing drugs prescribed by her rheumie to help her function with RA. Well this year the immune suppressing effect of these drugs has her having to quit her part in the organization of this tournie. She hopes to be able to continue to participate in this sport but is afraid of 'catching' something and is also getting weaker and starting to notice that her gait and strength is not what it used to be. The RA is progressing despite all the drugs she is taking. It is very important for the AP to work well to have a strong immune system so that our own bodies can get rid of the toxins that the minocin/doryx chases out of hiding. IMO the stronger our immunity is the better able we are to rid our bodies of the bacteria without having to suffer huge herxes. We are all different in our reactions so finding our own dosage by trial and error will most likely be necessary but in the long run we will be able to rid ourselves of our 'auto-immune' disease, what ever type we have, rather than just cover up the symptoms to be able to ''feel good'. I wish for all of you - patience, perseverance and a return to good health. take care and God Bless, Carol_DM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 what is floor curling tournament?? sally rheumatic Re: AP and LDN for RA?? Hi folks, I hope this info will be of help to you to stay the course with the AP and get off of all immune suppressing drugs. I just returned from a 3 day floor curling tournament and the husband and wife team that have run this tournament every year for the past 8 years are now having to step down due to the wife's RA. She told me that she is on quite a few immune suppressing drugs prescribed by her rheumie to help her function with RA. Well this year the immune suppressing effect of these drugs has her having to quit her part in the organization of this tournie. She hopes to be able to continue to participate in this sport but is afraid of 'catching' something and is also getting weaker and starting to notice that her gait and strength is not what it used to be. The RA is progressing despite all the drugs she is taking. It is very important for the AP to work well to have a strong immune system so that our own bodies can get rid of the toxins that the minocin/doryx chases out of hiding. IMO the stronger our immunity is the better able we are to rid our bodies of the bacteria without having to suffer huge herxes. We are all different in our reactions so finding our own dosage by trial and error will most likely be necessary but in the long run we will be able to rid ourselves of our 'auto-immune' disease, what ever type we have, rather than just cover up the symptoms to be able to ''feel good'. I wish for all of you - patience, perseverance and a return to good health. take care and God Bless, Carol_DM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 Eva, you've been through so much....and now getting to the end of this dark tunnel back to the LIGHT OF LIFE.....and I'm right behind you! Sally rheumatic Re: AP and LDN for RA?? rheumatic Date: Friday, March 25, 2011, 12:13 AM Hi folks, I hope this info will be of help to you to stay the course with the AP and get off of all immune suppressing drugs. I just returned from a 3 day floor curling tournament and the husband and wife team that have run this tournament every year for the past 8 years are now having to step down due to the wife's RA. She told me that she is on quite a few immune suppressing drugs prescribed by her rheumie to help her function with RA. Well this year the immune suppressing effect of these drugs has her having to quit her part in the organization of this tournie. She hopes to be able to continue to participate in this sport but is afraid of 'catching' something and is also getting weaker and starting to notice that her gait and strength is not what it used to be. The RA is progressing despite all the drugs she is taking. It is very important for the AP to work well to have a strong immune system so that our own bodies can get rid of the toxins that the minocin/doryx chases out of hiding. IMO the stronger our immunity is the better able we are to rid our bodies of the bacteria without having to suffer huge herxes. We are all different in our reactions so finding our own dosage by trial and error will most likely be necessary but in the long run we will be able to rid ourselves of our 'auto-immune' disease, what ever type we have, rather than just cover up the symptoms to be able to ''feel good'. I wish for all of you - patience, perseverance and a return to good health. take care and God Bless, Carol_DM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 Sally, I am so glad you feeling better and once you had your hips fixed you will do even better. Hang in there, yes you are seeing the light on the end of the tunnel. Eva From: Bob & Carol Zarn <bczarn@...> Subject: rheumatic Re: AP and LDN for RA?? rheumatic Date: Friday, March 25, 2011, 12:13 AM Hi folks, I hope this info will be of help to you to stay the course with the AP and get off of all immune suppressing drugs. I just returned from a 3 day floor curling tournament and the husband and wife team that have run this tournament every year for the past 8 years are now having to step down due to the wife's RA. She told me that she is on quite a few immune suppressing drugs prescribed by her rheumie to help her function with RA. Well this year the immune suppressing effect of these drugs has her having to quit her part in the organization of this tournie. She hopes to be able to continue to participate in this sport but is afraid of 'catching' something and is also getting weaker and starting to notice that her gait and strength is not what it used to be. The RA is progressing despite all the drugs she is taking. It is very important for the AP to work well to have a strong immune system so that our own bodies can get rid of the toxins that the minocin/doryx chases out of hiding. IMO the stronger our immunity is the better able we are to rid our bodies of the bacteria without having to suffer huge herxes. We are all different in our reactions so finding our own dosage by trial and error will most likely be necessary but in the long run we will be able to rid ourselves of our 'auto-immune' disease, what ever type we have, rather than just cover up the symptoms to be able to ''feel good'. I wish for all of you - patience, perseverance and a return to good health. take care and God Bless, Carol_DM Quote Link to comment Share on other sites More sharing options...
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