Guest guest Posted August 20, 2010 Report Share Posted August 20, 2010 Dear Sally, It is a one step forward and two steps backward type of healing. You get so far and then slip back a bit, then leap ahead somewhat only to be disappointed again for a while. Nothing remains status quo. Sometimes, you feel like you broke a barrier and are home free only to slip back a bit more. It is a roller coaster ride you are on. Not a smooth uphill climb. The reason for that is that these micoplasmas are all over the body wreaking havoc whereever in the body they go. One day, it is your back, then it is your arm, then it is a constant cough, then your sinuses can run, then you get leg cramps, then you freeze, then you sweat, sometimes you lose your voice, sometimes you get diarrhea. sometimes it seems like the nuisances go on forever. It depends on how deeply you are infected, how long you have been sick and how many or how long you were on toxic drugs before going on A/P. What you have to learn to do is keep your eye on the finish line and not get involved in the symptoms. Symptoms will come and go. Learn to ride the waves and know that the symptoms are temporary and a sign that the bacteria are fighting back and losing the fight. The reason you may feel sicker before you feel better is because the bacteria emits a toxin during die off.. You must welcome this even while you are throwing up your guts because you know that it is a sign that you are getting better even if you don't feel like you are. It is okay to take pallative measures to ease you through the rough spots, but please no toxic chemicals.  No Prednisone or remicade or what ever other products Rheumies are pushing these days. Stick with the protocol, rest a lot, eat well, exercise, but don't overdo it. The pain is from inflammation which will begin to subside. You may start to climb the first baby steps at about 6 months into the protocol. It took me a full 5 years of this and I am still in the healing process. I will continue to take my Minocin for the rest of my life because I don't ever want to be that sick ever again. Please don't get discouraged and fall away! Your very life depends on it. CREST is a terminal illness. Be kind to yourself, indulge yourself, and let others know that you are fighting for your life.~~~~~Dolores From: DEBBIE GIBSON & lt;Debbullwinkle@... & gt; Subject: Re: rheumatic Re: Question about LDN rheumatic Date: Thursday, August 19, 2010, 8:56 AM My pressure changes depending on where and who does and reads the Echo...I know that the PH spec here in town, Cincinnati, said he believes in beginning the PH meds immediately when dx...because that way you can try and stop it from climbing higher, limit damage to the heart... Yes, I have severe responses to anything they do invasively.....I had a lung biopsy years ago, etc...and everything that can happen, did...That is my feeling...why do the heart cath, if you think I have it, go ahead and treat me...or if you can see the heart damage from the PH on the echo, then treat me...he wants the gold standard of diagnostic tools, the heart cath... Since he is the only PH spec here in town, I won't burn bridges but I see no reason to do the heart cath now... Hang in there. Debb rheumatic Re: Question about LDN My pressure was 26 in January 2009, 34 in January 2010 and 41 in June 2010. I am concerned that it is going up quickly. I have mild regurgitation also but no other damage so to speak. In 2009 the echo said severe mitral valve prolapse but for some reason the echo now doesn't say that. My cardiologist is not that concerned but I said I was so I sought out a PH specialist. He has not said I need to do a heart cath at this time, nor do I want to. I had a bronchoscopy in '07 and had a severe inflammatory response so I want to avoid any unnecessary invasive procedures. I am satisfied I have PH so I don't really see the point in doing the heart cath. My goal is to reverse the PH through AP and LDN. May be a pipe dream but that is my goal! & gt; & gt; & gt; & gt; & gt; & gt; Does LDN help with Interstitial Lung Disease? I have it and & gt; & gt; & gt; dermatomyositis and wondering if the LDN might help both? --Celia & lt; & gt; & lt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2010 Report Share Posted August 20, 2010 Hi, Had a wondeful birthday with lots of cards and well wishes. Will spend the rest of the weekend with friends coming down from NY. I miss my old friends and welcome my new ones. Thanks for clearing it all up for everyone.  I'm still a bit confused.... I remembered you telling me back in time when we first met about photophoresis. I am glad I got through without having to do much more than A/P. As I look back, I didn't realize just how sick I was. I was staring death in the face. Everyone could see it but me. I was in too much pain to care and so I slept it off, most of the time waking only to take my minocin. I put my life on hold for 5 years. I am glad I was of retirement age and didn't have babies to take care of. I don't know how these young moms do it. I give them lots of credit. Take care~~~~Lots of love, Dolores > > > > > From: DEBBIE GIBSON <Debbullwinkle@...> > > > Subject: Re: rheumatic Re: Question about LDN > > > rheumatic > > > Date: Friday, August 20, 2010, 11:05 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > HI everyone, just wanted to clarify, I did > > > photopheresis for 3.5 yrs...I developed the lung > condition, > > > common to RA...Obliterative Bronchiolitis..my body > rejected > > > my lungs...the bronchioles were being obliterated. > The > > > photopheresis stopped this disease in its > > > tracks...Photopheresis has been used, to stop > pulmonary > > > fibrosis....as well...but I did not receive it for > PF or for > > > PH...it is NOT used for PH... > > > > > > Hope this helps. Debbie > > > > > > rheumatic Re: Question about LDN > > > > > > > > > > > > That is so encouraging! I really want to heal my > lungs with > > > my current treatment which is AP and LDN and not > muddy the > > > waters with other more toxic and expensive drugs > that may be > > > unnecessary. I see it as a race against time. If I > can get > > > my pressures down with these two meds then I > won't have > > > to go on the other stuff. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Does LDN help with Interstitial > Lung > > > Disease? I have it and > > > > > > > > > > dermatomyositis and wondering if > the > > > LDN might help both? --Celia <>< > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message > have > > > been removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have > been > > > removed] > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2010 Report Share Posted August 20, 2010 No worries Delores....Yes, I try to get the word out about photopheresis because many, and I do mean many physicians do not know about it or don't know the details...thank God Dr. Whitman ordered it for me...and then helped me " persuade " our ins co to allow me a trial, which then stopped my lung disease...and I went on to receive photo for 3.5 yrs...I know it works for PF, because my friend, received it for PF...whereas in my case, I developed OB, the bronchioles were being obliterated...as for PH...It has no effect on PH as far as any of the numerous studies that have been done so far...still being studied tho...so who knows... DRs are still not sure what caused my OB...there have been some cases in the literature where minocin use (as given to acne patients) developed OB but the OB stopped when they went off the minocin..in my case, the OB did not stop when I went off the minocin...and there have been cases of OB in RA patients...so who knows..I have SD and RA....both tests are strongly positive...but interestingly enough, my RNP antibody...which would be the lab test for MCTD has always been negative...so I don't have MCTD...just SD with an overlap of RA...no matter, the photopheresis stopped the OB in its' tracks....and I think it helped me enormously.. Yes, I cannot imagine having to take care of children when I first was dx..good grief...my son was in college...so that helped...the minocin helped me so much...most, if not all of my symptoms went away...but with the development of the OB and the question of why I got it...being there, was it the RA or the minocin use, DR. W took me off the minocin....so.... Glad you had a nice bday....always fun to celebrate our lives....I do it for the entire week...I call it Princess Week....I would like to push the celebration to a month but doubt hubby would go for that...enjoy the rest of your weekend...and Happy Birthday...thanks for all you give back to the patients to on this board....Hugs, Debbie rheumatic Re: Question about LDN > > > > > > > > > > > > That is so encouraging! I really want to heal my > lungs with > > > my current treatment which is AP and LDN and not > muddy the > > > waters with other more toxic and expensive drugs > that may be > > > unnecessary. I see it as a race against time. If I > can get > > > my pressures down with these two meds then I > won't have > > > to go on the other stuff. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Does LDN help with Interstitial > Lung > > > Disease? I have it and > > > > > > > > > > dermatomyositis and wondering if > the > > > LDN might help both? --Celia <>< > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message > have > > > been removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have > been > > > removed] > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2010 Report Share Posted August 20, 2010 Hi Dolores, Happy Belated! I have been on benicar for 3 weeks now, 20mg four times a day how long were you on benicar before starting the mino? what are the considerations, or tests that determine the length of phases? I read several articles but not find anything clear on the subject thanks, Ana ________________________________ From: mike rosner <martysfolks2004@...> rheumatic Sent: Fri, August 20, 2010 5:56:25 PM Subject: Re: rheumatic Re: Question about LDN  Hi, Had a wondeful birthday with lots of cards and well wishes. Will spend the rest of the weekend with friends coming down from NY. I miss my old friends and welcome my new ones. Thanks for clearing it all up for everyone.  I'm still a bit confused.... I remembered you telling me back in time when we first met about photophoresis. I am glad I got through without having to do much more than A/P. As I look back, I didn't realize just how sick I was. I was staring death in the face. Everyone could see it but me. I was in too much pain to care and so I slept it off, most of the time waking only to take my minocin. I put my life on hold for 5 years. I am glad I was of retirement age and didn't have babies to take care of. I don't know how these young moms do it. I give them lots of credit. Take care~~~~Lots of love, Dolores > > > > > From: DEBBIE GIBSON <Debbullwinkle@...> > > > Subject: Re: rheumatic Re: Question about LDN > > > rheumatic > > > Date: Friday, August 20, 2010, 11:05 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > HI everyone, just wanted to clarify, I did > > > photopheresis for 3.5 yrs...I developed the lung > condition, > > > common to RA...Obliterative Bronchiolitis..my body > rejected > > > my lungs...the bronchioles were being obliterated. > The > > > photopheresis stopped this disease in its > > > tracks...Photopheresis has been used, to stop > pulmonary > > > fibrosis....as well...but I did not receive it for > PF or for > > > PH...it is NOT used for PH... > > > > > > Hope this helps. Debbie > > > > > > rheumatic Re: Question about LDN > > > > > > > > > > > > That is so encouraging! I really want to heal my > lungs with > > > my current treatment which is AP and LDN and not > muddy the > > > waters with other more toxic and expensive drugs > that may be > > > unnecessary. I see it as a race against time. If I > can get > > > my pressures down with these two meds then I > won't have > > > to go on the other stuff. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Does LDN help with Interstitial > Lung > > > Disease? I have it and > > > > > > > > > > dermatomyositis and wondering if > the > > > LDN might help both? --Celia <>< > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message > have > > > been removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have > been > > > removed] > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2010 Report Share Posted August 20, 2010 Thanks for explaining how you got the OB. I didn't know that Minocin could cause that. I know that Minocin is not given for Lupus. My husband has lupus anticoagulant which is not lupus, but could develop into lupus. Sometimes he gets the red blotchy rash on his face when he has too much sun. He is on doxycycline. Doc never put him on that, we did it on our own. Lately, he is c/o of muscle pain or arthritic pain, so we are going to the docs to do an ANA & RF and other related blood work to see what he might be developing. My mom who is 96 has just developed thrombocytopenia. I wonder if this mycoplasma is running rampant in our family. I stay on the Minocin now at just 50mg. MWF as a precaution. When I first met you on the RBF site, I think it was. I was so sick... When I think back, I don't know how I made it. I was losing weight so fast that I looked like a cancer victim in the final stages. I didn't know how sick I really was. Then I went to the doctor who finally diagnosed me with PF and said it was probably from scleroderma. Well, I didn't really know what scleroderma was and then the doc dropped the bomb on me and said I was terminal and I had, at the most, 5-6 months more to live. That jolted me to reality and then I got on the computer and thru Lynne, I found the RBF and Richie gave me Dr. Trentham's name and the rest is history. It wasn't an easy ride back either. I think I threw up constantly for the first 3.5 yrs. and had diarrhea the rest of the time. I never did gain back all the weight, which was good because I was a bit chubby when I got sick and needed to lose a few, but I lost so much so fast and that scared a lot of people including my Mike. Hey, I like the idea of Princess week. I may just adopt that. Thanks to you also for always being there for people. You know so much more about lung problems than I do. My lungs, thank God, responded pretty quickly to the Minocin. Much faster than the rest of me did. I had the calcinosis so bad that little pebbles were popping out of my skin and that was so painful. Plus, just turning in bed would set me off crying with pain. I can't believe I made it through. Lynne was my mentor through the entire thing. She wrote to me every single night. That lady is an angel. Well, have a good night. I'll continue celebrating my ongoing Princess birthday tomorrow, sunday & stretch it into Monday and possibly Tuesday. Why not!~~~Take care, Dolores > > > > > > > > > > > > > From: DEBBIE GIBSON <Debbullwinkle@...> > > > > > > > Subject: Re: rheumatic Re: Question about > LDN > > > > > > > rheumatic > > > > > > > Date: Friday, August 20, 2010, 11:05 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > HI everyone, just wanted to clarify, I did > > > > > > > photopheresis for 3.5 yrs...I developed the > lung > > > condition, > > > > > > > common to RA...Obliterative Bronchiolitis..my > body > > > rejected > > > > > > > my lungs...the bronchioles were being > obliterated. > > > The > > > > > > > photopheresis stopped this disease in its > > > > > > > tracks...Photopheresis has been used, to stop > > > pulmonary > > > > > > > fibrosis....as well...but I did not receive it > for > > > PF or for > > > > > > > PH...it is NOT used for PH... > > > > > > > > > > > > > > Hope this helps. Debbie > > > > > > > > > > > > > > rheumatic Re: Question about LDN > > > > > > > > > > > > > > > > > > > > > > > > > > > > That is so encouraging! I really want to heal > my > > > lungs with > > > > > > > my current treatment which is AP and LDN and > not > > > muddy the > > > > > > > waters with other more toxic and expensive > drugs > > > that may be > > > > > > > unnecessary. I see it as a race against time. > If I > > > can get > > > > > > > my pressures down with these two meds then I > > > won't have > > > > > > > to go on the other stuff. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Does LDN help with > Interstitial > > > Lung > > > > > > > Disease? I have it and > > > > > > > > > > > > > > > > > > dermatomyositis and > wondering if > > > the > > > > > > > LDN might help both? --Celia <>< > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this > message > > > have > > > > > > > been removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message > have > > > been > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have > been > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have > been > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2010 Report Share Posted August 20, 2010 Hi Ana, The reason the timing for things is not clear is because we all develop along on a different time-line. Some people have to repeat phase #1 ---Twice or stay on it longer before they can advance to phase 2. It all depends on your body and how it responds. Also, when I started, I did it wrong the first time, so I had to repeat it. I was on phase #1 for about 6-8 months. Then I went on a modified Phase #2 because I was having heart rythm problems, so I took it slowly. I think totally, it took me three years to complete Phase 3. I just ended that around the end of last year or the beginning of this year when I went into remission. Remission doesn't happen overnight. It develops slowly. Complete remission came in April after my blood work was stable at normal after a 6 month waiting period. It is difficult to say exactly but I think it took about a year before I could truly say I was in remission. Sometimes we think we have reach remission and then a few weeks later, we develop another symptom which means not all the micoplasmas are dead. There are still lying dormant ready to attack and they regroup and you get to feeling sick after a spell of wellness. So, the definition is vague and the time line is also vague. I started Benicar is September 2007 and then started Mino in November. But was doing it wrong, so I had to start again. I think I got it going correctly by February, 2008, Started going into remission by spring 2009 and was declared in full remission by spring 2010. I would say it took about 3 years. Prior to that I was on A/P for two almost 3 years. I got very sick in 2004, was diagnosed in 2005. Started Minocin slowly in December 2005 and went to full dose Jan. 2006. Some of it may not be exactly correct on the time line because I was in a brain fog for a good portion of the cure. Basically, I remember sleeping a lot, throwing up a lot and lost a lot of memory from that time period. Through my illness, I don't remember doing much of anything. I basically lived in my lazyboy chair napping the days and nights away and barely nibbling on bits of food as I had no appetite and lived on pills most of the time. I remember being nauseous all the time. I'm sorry I can't be more help to you. That period of my life is still very foggy to me. Best to you, Dolores > > > > > > > > > > > > > From: DEBBIE GIBSON <Debbullwinkle@...> > > > > > > > Subject: Re: rheumatic Re: Question about LDN > > > > > > > rheumatic > > > > > > > Date: Friday, August 20, 2010, 11:05 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > HI everyone, just wanted to clarify, I did > > > > > > > photopheresis for 3.5 yrs...I developed the lung > > > condition, > > > > > > > common to RA...Obliterative Bronchiolitis..my > body > > > rejected > > > > > > > my lungs...the bronchioles were being > obliterated. > > > The > > > > > > > photopheresis stopped this disease in its > > > > > > > tracks...Photopheresis has been used, to stop > > > pulmonary > > > > > > > fibrosis....as well...but I did not receive it > for > > > PF or for > > > > > > > PH...it is NOT used for PH... > > > > > > > > > > > > > > Hope this helps. Debbie > > > > > > > > > > > > > > rheumatic Re: Question about LDN > > > > > > > > > > > > > > > > > > > > > > > > > > > > That is so encouraging! I really want to heal my > > > lungs with > > > > > > > my current treatment which is AP and LDN and not > > > muddy the > > > > > > > waters with other more toxic and expensive drugs > > > that may be > > > > > > > unnecessary. I see it as a race against time. If > I > > > can get > > > > > > > my pressures down with these two meds then I > > > won't have > > > > > > > to go on the other stuff. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Does LDN help with > Interstitial > > > Lung > > > > > > > Disease? I have it and > > > > > > > > > > > > > > > > > > dermatomyositis and wondering > if > > > the > > > > > > > LDN might help both? --Celia <>< > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this > message > > > have > > > > > > > been removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message > have > > > been > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have > been > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have > been > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2010 Report Share Posted August 20, 2010 This is a great description of the journey many of us have been through, going through. Its shifting sands, with general gradual improvement. But it does get better, and worse, fingers crossed. On 21 Aug 2010, at 02:46, mike rosner wrote: > Dear Sally, It is a one step forward and two steps backward type > of healing. You get so far and then slip back a bit, then leap > ahead somewhat only to be disappointed again for a while. Nothing > remains status quo. Sometimes, you feel like you broke a barrier > and are home free only to slip back a bit more. It is a roller > coaster ride you are on. Not a smooth uphill climb. The reason > for that is that these micoplasmas are all over the body wreaking > havoc whereever in the body they go. One day, it is your back, then > it is your arm, then it is a constant cough, then your sinuses can > run, then you get leg cramps, then you freeze, then you sweat, > sometimes you lose your voice, sometimes you get diarrhea. > sometimes it seems like the nuisances go on forever. It depends on > how deeply you are infected, how long you have been sick and how > many or how long you were on toxic drugs before going on A/P. What > you have to learn to do is keep your eye > on the finish line and not get involved in the symptoms. Symptoms > will come and go. Learn to ride the waves and know that the > symptoms are temporary and a sign that the bacteria are fighting > back and losing the fight. The reason you may feel sicker before > you feel better is because the bacteria emits a toxin during die > off.. You must welcome this even while you are throwing up your > guts because you know that it is a sign that you are getting > better even if you don't feel like you are. It is okay to take > pallative measures to ease you through the rough spots, but please > no toxic chemicals. No Prednisone or remicade or what ever other > products Rheumies are pushing these days. Stick with the protocol, > rest a lot, eat well, exercise, but don't overdo it. The pain is > from inflammation which will begin to subside. You may start to > climb the first baby steps at about 6 months into the protocol. It > took me a full 5 years of this and I am > still in the healing process. I will continue to take my Minocin > for the rest of my life because I don't ever want to be that sick > ever again. Please don't get discouraged and fall away! Your very > life depends on it. CREST is a terminal illness. Be kind to > yourself, indulge yourself, and let others know that you are > fighting for your life.~~~~~Dolores > > > > From: DEBBIE GIBSON & lt;Debbullwinkle@... & gt; > Subject: Re: rheumatic Re: Question about LDN > rheumatic > Date: Thursday, August 19, 2010, 8:56 AM > > My pressure changes depending on where and who does and reads the > Echo...I know that the PH spec here in town, Cincinnati, said he > believes in beginning the PH meds immediately when dx...because > that way you can try and stop it from climbing higher, limit damage > to the heart... > Yes, I have severe responses to anything they do invasively.....I > had a lung biopsy years ago, etc...and everything that can happen, > did...That is my feeling...why do the heart cath, if you think I > have it, go ahead and treat me...or if you can see the heart damage > from the PH on the echo, then treat me...he wants the gold standard > of diagnostic tools, the heart cath... > Since he is the only PH spec here in town, I won't burn bridges but > I see no reason to do the heart cath now... > Hang in there. Debb > rheumatic Re: Question about LDN > > My pressure was 26 in January 2009, 34 in January 2010 and 41 in > June 2010. I am concerned that it is going up quickly. I have mild > regurgitation also but no other damage so to speak. In 2009 the > echo said severe mitral valve prolapse but for some reason the echo > now doesn't say that. My cardiologist is not that concerned but I > said I was so I sought out a PH specialist. He has not said I need > to do a heart cath at this time, nor do I want to. I had a > bronchoscopy in '07 and had a severe inflammatory response so I > want to avoid any unnecessary invasive procedures. I am satisfied I > have PH so I don't really see the point in doing the heart cath. My > goal is to reverse the PH through AP and LDN. May be a pipe dream > but that is my goal! > > > & gt; & gt; & gt; > & gt; & gt; & gt; Does LDN help with Interstitial Lung Disease? I have > it and > & gt; & gt; & gt; dermatomyositis and wondering if the LDN might help > both? --Celia & lt; & gt; & lt; > & gt; & gt; & gt; > & gt; & gt; > & gt; & gt; > & gt; & gt; > & gt; & gt; > & gt; & gt; > & gt; & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2010 Report Share Posted August 21, 2010 What is OB? Re: rheumatic Re: Question about LDN No worries Delores....Yes, I try to get the word out about photopheresis because many, and I do mean many physicians do not know about it or don't know the details...thank God Dr. Whitman ordered it for me...and then helped me " persuade " our ins co to allow me a trial, which then stopped my lung disease...and I went on to receive photo for 3.5 yrs...I know it works for PF, because my friend, received it for PF...whereas in my case, I developed OB, the bronchioles were being obliterated...as for PH...It has no effect on PH as far as any of the numerous studies that have been done so far...still being studied tho...so who knows... DRs are still not sure what caused my OB...there have been some cases in the literature where minocin use (as given to acne patients) developed OB but the OB stopped when they went off the minocin..in my case, the OB did not stop when I went off the minocin...and there have been cases of OB in RA patients...so who knows..I have SD and RA....both tests are strongly positive...but interestingly enough, my RNP antibody...which would be the lab test for MCTD has always been negative...so I don't have MCTD...just SD with an overlap of RA...no matter, the photopheresis stopped the OB in its' tracks....and I think it helped me enormously.. Yes, I cannot imagine having to take care of children when I first was dx..good grief...my son was in college...so that helped...the minocin helped me so much...most, if not all of my symptoms went away...but with the development of the OB and the question of why I got it...being there, was it the RA or the minocin use, DR. W took me off the minocin....so.... Glad you had a nice bday....always fun to celebrate our lives....I do it for the entire week...I call it Princess Week....I would like to push the celebration to a month but doubt hubby would go for that...enjoy the rest of your weekend...and Happy Birthday...thanks for all you give back to the patients to on this board....Hugs, Debbie rheumatic Re: Question about LDN > > > > > > > > > > > > That is so encouraging! I really want to heal my > lungs with > > > my current treatment which is AP and LDN and not > muddy the > > > waters with other more toxic and expensive drugs > that may be > > > unnecessary. I see it as a race against time. If I > can get > > > my pressures down with these two meds then I > won't have > > > to go on the other stuff. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Does LDN help with Interstitial > Lung > > > Disease? I have it and > > > > > > > > > > dermatomyositis and wondering if > the > > > LDN might help both? --Celia <>< > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message > have > > > been removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have > been > > > removed] > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2010 Report Share Posted August 21, 2010 OB is Obliterative Bronchiolitis...the bronchioles in my lungs were being obliterated by my autoimmune disease or the minocin I was on...no definitive answer as to what causes it...but there have been cases of OB in the literature...some using minocin for acne....some patients with RA...so my Dr took me off minocin. Hope this helps. Debb rheumatic Re: Question about LDN > > > > > > > > > > > > That is so encouraging! I really want to heal my > lungs with > > > my current treatment which is AP and LDN and not > muddy the > > > waters with other more toxic and expensive drugs > that may be > > > unnecessary. I see it as a race against time. If I > can get > > > my pressures down with these two meds then I > won't have > > > to go on the other stuff. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Does LDN help with Interstitial > Lung > > > Disease? I have it and > > > > > > > > > > dermatomyositis and wondering if > the > > > LDN might help both? --Celia <>< > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message > have > > > been removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have > been > > > removed] > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2010 Report Share Posted August 21, 2010 yes, I think the benicar needs to be increased to 40x4, in spite of the very low bp, in my case thank you Dolores, I hope you keep on doing well,  Ana ________________________________ From: mike rosner <martysfolks2004@...> rheumatic Sent: Fri, August 20, 2010 10:15:59 PM Subject: Re: rheumatic Re: Question about LDN  Hi Ana, The reason the timing for things is not clear is because we all develop along on a different time-line. Some people have to repeat phase #1 ---Twice or stay on it longer before they can advance to phase 2. It all depends on your body and how it responds. Also, when I started, I did it wrong the first time, so I had to repeat it. I was on phase #1 for about 6-8 months. Then I went on a modified Phase #2 because I was having heart rythm problems, so I took it slowly. I think totally, it took me three years to complete Phase 3. I just ended that around the end of last year or the beginning of this year when I went into remission. Remission doesn't happen overnight. It develops slowly. Complete remission came in April after my blood work was stable at normal after a 6 month waiting period. It is difficult to say exactly but I think it took about a year before I could truly say I was in remission. Sometimes we think we have reach remission and then a few weeks later, we develop another symptom which means not all the micoplasmas are dead. There are still lying dormant ready to attack and they regroup and you get to feeling sick after a spell of wellness. So, the definition is vague and the time line is also vague. I started Benicar is September 2007 and then started Mino in November. But was doing it wrong, so I had to start again. I think I got it going correctly by February, 2008, Started going into remission by spring 2009 and was declared in full remission by spring 2010. I would say it took about 3 years. Prior to that I was on A/P for two almost 3 years. I got very sick in 2004, was diagnosed in 2005. Started Minocin slowly in December 2005 and went to full dose Jan. 2006. Some of it may not be exactly correct on the time line because I was in a brain fog for a good portion of the cure. Basically, I remember sleeping a lot, throwing up a lot and lost a lot of memory from that time period. Through my illness, I don't remember doing much of anything. I basically lived in my lazyboy chair napping the days and nights away and barely nibbling on bits of food as I had no appetite and lived on pills most of the time. I remember being nauseous all the time. I'm sorry I can't be more help to you. That period of my life is still very foggy to me. Best to you, Dolores > > > > > > > > > > > > > From: DEBBIE GIBSON <Debbullwinkle@...> > > > > > > > Subject: Re: rheumatic Re: Question about LDN > > > > > > > rheumatic > > > > > > > Date: Friday, August 20, 2010, 11:05 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > HI everyone, just wanted to clarify, I did > > > > > > > photopheresis for 3.5 yrs...I developed the lung > > > condition, > > > > > > > common to RA...Obliterative Bronchiolitis..my > body > > > rejected > > > > > > > my lungs...the bronchioles were being > obliterated. > > > The > > > > > > > photopheresis stopped this disease in its > > > > > > > tracks...Photopheresis has been used, to stop > > > pulmonary > > > > > > > fibrosis....as well...but I did not receive it > for > > > PF or for > > > > > > > PH...it is NOT used for PH... > > > > > > > > > > > > > > Hope this helps. Debbie > > > > > > > > > > > > > > rheumatic Re: Question about LDN > > > > > > > > > > > > > > > > > > > > > > > > > > > > That is so encouraging! I really want to heal my > > > lungs with > > > > > > > my current treatment which is AP and LDN and not > > > muddy the > > > > > > > waters with other more toxic and expensive drugs > > > that may be > > > > > > > unnecessary. I see it as a race against time. If > I > > > can get > > > > > > > my pressures down with these two meds then I > > > won't have > > > > > > > to go on the other stuff. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Does LDN help with > Interstitial > > > Lung > > > > > > > Disease? I have it and > > > > > > > > > > > > > > > > > > dermatomyositis and wondering > if > > > the > > > > > > > LDN might help both? --Celia <>< > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this > message > > > have > > > > > > > been removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message > have > > > been > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have > been > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have > been > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2010 Report Share Posted August 22, 2010 Hi. What does doing mino the right way entail? I want to make sure I am doing that...thanks June On Aug 21, 2010, at 11:51 PM, Ana Andrescu wrote: > yes, I think the benicar needs to be increased to 40x4, in spite of > the very low > bp, in my case > thank you Dolores, > I hope you keep on doing well, > Ana > > ________________________________ > From: mike rosner <martysfolks2004@...> > rheumatic > Sent: Fri, August 20, 2010 10:15:59 PM > Subject: Re: rheumatic Re: Question about LDN > > > Hi Ana, The reason the timing for things is not clear is because we > all develop > along on a different time-line. Some people have to repeat phase #1 > ---Twice or > stay on it longer before they can advance to phase 2. It all depends > on your > body and how it responds. Also, when I started, I did it wrong the > first time, > so I had to repeat it. I was on phase #1 for about 6-8 months. Then > I went on a > modified Phase #2 because I was having heart rythm problems, so I > took it > slowly. I think totally, it took me three years to complete Phase 3. > I just > ended that around the end of last year or the beginning of this year > when I went > into remission. Remission doesn't happen overnight. It develops > slowly. Complete > remission came in April after my blood work was stable at normal > after a 6 month > waiting period. It is difficult to say exactly but I think it took > about a year > before I could truly say I was in remission. Sometimes we think we > have reach > remission > and then a few weeks later, we develop another symptom which means > not all the > micoplasmas are dead. There are still lying dormant ready to attack > and they > regroup and you get to feeling sick after a spell of wellness. So, the > definition is vague and the time line is also vague. I started > Benicar is > September 2007 and then started Mino in November. But was doing it > wrong, so I > had to start again. I think I got it going correctly by February, > 2008, Started > going into remission by spring 2009 and was declared in full > remission by spring > 2010. I would say it took about 3 years. Prior to that I was on A/P > for two > almost 3 years. I got very sick in 2004, was diagnosed in 2005. > Started Minocin > slowly in December 2005 and went to full dose Jan. 2006. Some of it > may not be > exactly correct on the time line because I was in a brain fog for a > good portion > of the cure. Basically, I remember sleeping a lot, throwing up a lot > and lost a > lot of memory from > that time period. Through my illness, I don't remember doing much of > anything. I > basically lived in my lazyboy chair napping the days and nights away > and barely > nibbling on bits of food as I had no appetite and lived on pills > most of the > time. I remember being nauseous all the time. I'm sorry I can't be > more help to > you. That period of my life is still very foggy to me. Best to you, > Dolores > > > > > > > > > > > > > > > > > > > > > > > From: DEBBIE GIBSON <Debbullwinkle@...> > > > > > > > > > > > Subject: Re: rheumatic Re: Question about LDN > > > > > > > > > > > rheumatic > > > > > > > > > > > Date: Friday, August 20, 2010, 11:05 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > HI everyone, just wanted to clarify, I did > > > > > > > > > > > photopheresis for 3.5 yrs...I developed the lung > > > > > condition, > > > > > > > > > > > common to RA...Obliterative Bronchiolitis..my > > body > > > > > rejected > > > > > > > > > > > my lungs...the bronchioles were being > > obliterated. > > > > > The > > > > > > > > > > > photopheresis stopped this disease in its > > > > > > > > > > > tracks...Photopheresis has been used, to stop > > > > > pulmonary > > > > > > > > > > > fibrosis....as well...but I did not receive it > > for > > > > > PF or for > > > > > > > > > > > PH...it is NOT used for PH... > > > > > > > > > > > > > > > > > > > > > > Hope this helps. Debbie > > > > > > > > > > > > > > > > > > > > > > rheumatic Re: Question about LDN > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > That is so encouraging! I really want to heal my > > > > > lungs with > > > > > > > > > > > my current treatment which is AP and LDN and not > > > > > muddy the > > > > > > > > > > > waters with other more toxic and expensive drugs > > > > > that may be > > > > > > > > > > > unnecessary. I see it as a race against time. If > > I > > > > > can get > > > > > > > > > > > my pressures down with these two meds then I > > > > > won't have > > > > > > > > > > > to go on the other stuff. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Does LDN help with > > Interstitial > > > > > Lung > > > > > > > > > > > Disease? I have it and > > > > > > > > > > > > > > > > > > > > > > > > > > dermatomyositis and wondering > > if > > > > > the > > > > > > > > > > > LDN might help both? --Celia <>< > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this > > message > > > > > have > > > > > > > > > > > been removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message > > have > > > > > been > > > > > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have > > been > > > > > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have > > been > > > > > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2010 Report Share Posted August 22, 2010 same question with me. didn't know about phase l,2,3. Dr. Sinnott told me to start 100mg twice day every day (I haven't had an in person visit with him yet). 2nd week I wanted to die, so doc said to do 100mg twice day MWF...and slowly work back up to 7 days. Dr. S. been doing AP for about 30 years. Re: rheumatic Re: Question about LDN > > > > > > > rheumatic > > > > > > > Date: Friday, August 20, 2010, 11:05 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > HI everyone, just wanted to clarify, I did > > > > > > > photopheresis for 3.5 yrs...I developed the lung > > > condition, > > > > > > > common to RA...Obliterative Bronchiolitis..my > body > > > rejected > > > > > > > my lungs...the bronchioles were being > obliterated. > > > The > > > > > > > photopheresis stopped this disease in its > > > > > > > tracks...Photopheresis has been used, to stop > > > pulmonary > > > > > > > fibrosis....as well...but I did not receive it > for > > > PF or for > > > > > > > PH...it is NOT used for PH... > > > > > > > > > > > > > > Hope this helps. Debbie > > > > > > > > > > > > > > rheumatic Re: Question about LDN > > > > > > > > > > > > > > > > > > > > > > > > > > > > That is so encouraging! I really want to heal my > > > lungs with > > > > > > > my current treatment which is AP and LDN and not > > > muddy the > > > > > > > waters with other more toxic and expensive drugs > > > that may be > > > > > > > unnecessary. I see it as a race against time. If > I > > > can get > > > > > > > my pressures down with these two meds then I > > > won't have > > > > > > > to go on the other stuff. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Does LDN help with > Interstitial > > > Lung > > > > > > > Disease? I have it and > > > > > > > > > > > > > > > > > > dermatomyositis and wondering > if > > > the > > > > > > > LDN might help both? --Celia <>< > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this > message > > > have > > > > > > > been removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message > have > > > been > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have > been > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have > been > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2010 Report Share Posted August 22, 2010 I wasn't told about phases. I know some people start out with clindamycin injections for 5 days and then go to minocin. Are these the phases? I was just told to do 100 mg minocin twice a day every other day. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Does LDN help with > > Interstitial > > > > > Lung > > > > > > > > > > > Disease? I have it and > > > > > > > > > > > > > > > > > > > > > > > > > > dermatomyositis and wondering > > if > > > > > the > > > > > > > > > > > LDN might help both? --Celia <>< > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this > > message > > > > > have > > > > > > > > > > > been removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message > > have > > > > > been > > > > > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have > > been > > > > > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have > > been > > > > > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2010 Report Share Posted August 24, 2010 Hi kids. Just back from San . It is a two hour drive each way. Left Sunday to visit with friends coming in off a cruise ship and to meet another friend coming in by plane for a 5 day visit. On the road, Mom got sick again and wound up in the hospital. Our short stay got extended and we just drove back home and checking the computer. I notice some people are asking about phases. That is because we were talking about The Marshall Protocol which is a bit different than the antibiotic protocol in that you follow certain phases of it with increasing doses and different antibiotics. The phases do not pertain to the regular antibiotic protocol. The answer was meant for the person who asked me about the Benicar dose which is part of the Marshall Protocol. For those of you who want to know more about the Marshall Protocol, just google it and you will read all about it. It is still a protocol that uses antibiotics, but with a twist. Hope this clears up the questions. Dolores > From: marlaprendergast <kws11@...> > Subject: rheumatic Re: Question about LDN > rheumatic > Date: Sunday, August 22, 2010, 6:06 PM > > > > > > > > > > > > > > > > Â > > > > > > > > > > I wasn't told about phases. I know some people > start out with clindamycin injections for 5 days and then go > to minocin. Are these the phases? I was just told to do 100 > mg minocin twice a day every other day. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Does LDN help > with > > > > Interstitial > > > > > > > > > Lung > > > > > > > > > > > > > > > > > > > Disease? I have it and > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > dermatomyositis > and wondering > > > > if > > > > > > > > > the > > > > > > > > > > > > > > > > > > > LDN might help both? --Celia > <>< > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of > this > > > > message > > > > > > > > > have > > > > > > > > > > > > > > > > > > > been removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this > message > > > > have > > > > > > > > > been > > > > > > > > > > > > > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this > message have > > > > been > > > > > > > > > > > > > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this > message have > > > > been > > > > > > > > > > > > > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message > have been > > > > > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have > been removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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