Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Steve, I will be replying, but due to neck problems made worse by overuse of the computer, I am taking a small break in terms of the time I spend at the computer. Your question is important, and I will answer it as soon as I can. (RA 23+ years, AP since Nov. 97) rheumatic 23 years > Hi Janine.. > > Thanks so much for your response. You are the only one who responded (so > far) to my questions. I guess the other old timers in here figure if I want > to hear success stories about the AP I can go to the web site. I have been Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Hello Steve and all my good friends, Steve and I have been in touch for awhile about the AP. I can understand Steve's hesitation about starting the AP, because all of us went through the same thing. I started three months after watching everyone else in the group and talking long distance with those who have fallen into remission. Steve we all ask the very same questions, will it work for me? Will I get worse and never better? Will I cause damage? I can also tell you that those of us who took the plunge that the first time we went backwards we were scared. Did we do the wrong choice? BUT no, as we then turn and go for the better we are happy and we feel like this is it, we'll make it. THEN, the next herx comes around. The mind is twisted again, we think, oh no, it was going so good, it must have been psychological. It isn't. Now, we know, we stay confident and actually look forward to these herxes becasue we get better. Those of us with lung problems can hardly breathe, we know we'll have to get through all the thick of things and we'll be okay later. Janine is a good friend ( I can't wait to meet her here!) and Janine's story is amazing. When Janine lost her " Harley wheelchair " , excitement ran through the group like a ball of fire. We all look our for each other here and we stick together through the good and hard times. Some stories are pretty amazing. One that everyone loved was about ( must be saying oh no right now, LOL) we hadn't heard from her and she was in a low point and so we sent the police out to her and weeeelll, was all nice and comfy in her baby dolls in bed. Not quite the thing to have a policeman hanging over your bed. We have alot of heart for each other and for others we don't even know. This story was amazing.After Lyne from Calgary read a local article of a woman in Montreal she felt terrible for, she mentioned it in our group. We did feel all the same way and since I live near Montreal, I made some phone calls and met up with a super lady who has alot of courage, her name is KilCullan. Handicapped from head to toe from Lupus, the internet is her soulmate. I met up with and have been very close to her ever since. So, you see, this tight knit family is very strong and when you decide to try the AP, we will all be there to help you through it. The only one who can make the decision is you, it really has to be your choice. You have to be committed to it and not just for a couple of weeks, it is not an overnight thing. Take care, > rheumatic 23 years > > > Hi Janine.. > > Thanks so much for your response. You are the only one who responded (so > far) to my questions. I guess the other old timers in here > figure if I want > to hear success stories about the AP I can go to the web site. I > have been > there but I felt it would be much more immediate if I heard from > those on the > list now since I am starting to get a feel for individual > personalitys. So > far I have been very tentative in deciding to start the AP because I am > hesitant to rock the boat. My therapy has been conventional > until now and my > RA is generally controlled with the medications I take and > painless but I am > very slowly losing the use of my hands. I am starting to > recognize the need > to do somthing else before that happens. I am spacifically > curious about the > ability of the AP to halt or possibly reverse damage done to the > connective > tissue in the hands of an RA patient. The only outwardly visible > signs of my > RA are the knarley hands that seem to be typical of RA and a > greatly reduced > energy level. Pain is inconsequencial unless, of course, I > forget to take my > meds. > > One of the not so visible signs of my disease that is of great > concern to me > is a hugely diminished sexual capacity. I have not heard any of > the men on > this list talk about that particular problem although I can understand > why(assuming some or all of them have it too) I would like to > discuss this > issue with any of the men that are having this problem > confidentially and in > personal e-mails if necessary although I have no problem > discussing it with > the group as a whole. > > After 26 years with rheumatic disease, the prospect of regaining some > semblance of a " normal " lifestyle is heady stuff to think about. > I am just > trying to be very careful in my research so as to not make any > mistakes that > could make me worse off than I am now. > > Steve > > ------------------------------------------------------------------------ > Free E-Cards, Screensavers, and Digital Pictures! > Corbis.com: > 1/3358/0/_/532797/_/955665577/ > ------------------------------------------------------------------------ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Hi Steve, I will throw my two cents worth in also, although I am in the very early stages of AP. I was diagnosed with RA about three and a half years ago, and was treated conventionally (methotrexate, naprosyn, salazopyrin - now I just take methotrexate). I do have to say that I am pleased in many ways that I was treated pretty aggressively at first, as I have no joint damage whatsoever, and have been basically pain-free for the past three years. However, the though of taking methotrexate (and whatever else is suggested on the drug merry-go-round) for the rest of my life horrified me (I am only 31). So when I came across the book by fluke on Amazon.com, and then the websites for the Road Back foundation and for rheumatic.org, I decided to give it a go. What harm could it do? I have been on it for a month and a half or so now, and am herxing. I am still on 12.5 mg methotrexate, but will be weaning off it in a few more weeks time. The fact that I am herxing tells me that the AP is definitely doing something!! I have now done a hell of a lot of reading, both of books, journal articles, and the web, and honestly feel that this treatment is one of hope. It is as though I know that somehow it will work! As for your other comment about sexual capacity, I also find it interesting that no-one ever discusses it!! Although I am a female, and my experiences may be different, my sex drive dropped to almost non-existent once I got RA and started on the methotrexate. So I am also hoping that once I stop taking it things might return more to normal (so does my husband!!!!). Does anyone else have any comments? So Steve, I would suggest that you go for it! Even if it doesn't work, what would you have lost? You can always go back to conventional treatment (That is how I am " rationalising " to dubious friends and relatives). But I really, really hope that neither of us would need to. Thanks, Lara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2000 Report Share Posted April 14, 2000 Hey Steve. I've been on the AP for 2 years. I actually started on the protocol from Prof Nicholson at www.immed.org. I'm now thinking about trying the IV clindamycin. I wish that I had started with that. Don't get me wrong. I am 95% better. I'm just getting a little impatient and want to be 100%. I started with doxycycline in March of 98. Since then, I have switched several times from Cipro to Maxaquin to Biaxin. I have been on Biaxin the longest. This week, I went back to my GP to restart the doxycycline. I've only been on it 2 days, but I do feel some improvement (I don't want to jinx it). I had mainly Lupus symptoms, and I caught mine very, very early. I was diagnosed with ITP (low platelets) in January of 96. My hematologist said it could develop into Lupus. That's when I started researching and found the connection between the mycoplasma and autoimmune diseases. I figured that my ITP was just an early symptom of more painful things to come. I was exactly right because in February of 98, my " Lupus symptoms " started. I began the protocol in March of 98. It did not take me but 2 weeks of that pain and fatigue to know that I could not live the rest of my life like that. I'm fortunate in that I can trace my problems back to a definite urinary tract infection that I had prior to being diagnosed with ITP in 96. I still have the infection to the day, but since being on the doxycycline again, it seems to be getting better (again, I don't want to jinx it). Anyway, sorry this is so long. I just wanted you to know how the AP has helped me. I say a prayer everynight that the medical community will WAKE UP! I'm glad that I started the AP and if this ever happened to one of my daughters, I would not think twice about putting them on it. --- N51SK@... wrote: > Hi Janine.. > > Thanks so much for your response. You are the only > one who responded (so > far) to my questions. I guess the other old timers > in here figure if I want > to hear success stories about the AP I can go to the > web site. I have been > there but I felt it would be much more immediate if > I heard from those on the > list now since I am starting to get a feel for > individual personalitys. So > far I have been very tentative in deciding to start > the AP because I am > hesitant to rock the boat. My therapy has been > conventional until now and my > RA is generally controlled with the medications I > take and painless but I am > very slowly losing the use of my hands. I am > starting to recognize the need > to do somthing else before that happens. I am > spacifically curious about the > ability of the AP to halt or possibly reverse damage > done to the connective > tissue in the hands of an RA patient. The only > outwardly visible signs of my > RA are the knarley hands that seem to be typical of > RA and a greatly reduced > energy level. Pain is inconsequencial unless, of > course, I forget to take my > meds. > > One of the not so visible signs of my disease that > is of great concern to me > is a hugely diminished sexual capacity. I have not > heard any of the men on > this list talk about that particular problem > although I can understand > why(assuming some or all of them have it too) I > would like to discuss this > issue with any of the men that are having this > problem confidentially and in > personal e-mails if necessary although I have no > problem discussing it with > the group as a whole. > > After 26 years with rheumatic disease, the prospect > of regaining some > semblance of a " normal " lifestyle is heady stuff to > think about. I am just > trying to be very careful in my research so as to > not make any mistakes that > could make me worse off than I am now. > > Steve > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2000 Report Share Posted April 14, 2000 Dear , Now that you are going back on Docycycline, are you going to continue the Biaxin? How long did you stay on each antibiotic and what made you switch to another? Thanks, gloria ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
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