Guest guest Posted July 26, 2004 Report Share Posted July 26, 2004 rheumatic Wegner's granulomatosis? > Hi Everyone, > > Does anyone have any knowledge about a disease called Wegener's > granulomatosis? It seems to share many of our " auto-immune " > characteristics, and I'd sure like to help two local families > affected by it by suggesting the antibiotic protocol. > > Thanks in advance! > > ~Connie My oldest brother supposedly died from the complications of that disease. The reason that I say supposedly is that it wasn't confirmed to be wegner's until either very close to his death or after, I'm not sure of the exact time. Regardless, I would be happy to help out with anything in the way of information about his experiences. What I don't know I can ask his wife. Unfortunately, he never used AP or anything like it so I might also turn out to be a poor source for what you are seeking. Feel free to email me any questions and I'll get you whatever I can. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Hi Connie, This question came up several years ago when Dr. Chiu was still with us. I responded to the group that the AP should work and was certainly worth trying. Dr. Chiu chimed in with his response that he had treated Wegener's granulomatosis with the AP successfully. Conventional medicine uses immunosuppressant to try to control it. It's a very nasty disease. Ethel rheumatic Wegner's granulomatosis? > Hi Everyone, > > Does anyone have any knowledge about a disease called Wegener's > granulomatosis? It seems to share many of our " auto-immune " > characteristics, and I'd sure like to help two local families > affected by it by suggesting the antibiotic protocol. > > Thanks in advance! > > ~Connie > > > > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Thank you, Ethel - I thought I remembered the topic had come up several years ago during the time Dr. Chiu posted. He was such a great resource for this group! I trust he is still successfully treating rheumatic patients in New Zealand? As for Wegener's - it indeed sounds nasty. Interestingly, in looking it up on www.emedicine.com I found several articles, one of which hinted that antibiotics might be used in keeping people in remission (after they've been treated with conventional immune suppressants.) Here's a snipet of the actual site at: http://www.emedicine.com/med/topic2401.htm " Daily treatment with the antibiotic sulfamethoxazole/trimethoprim has reduced relapse rates in published series. A placebo-controlled study published in 1996 (Stageman, 1996) demonstrated that 82% of patients receiving cotrimoxazole remained in remission compared to 60% of those in the placebo group. The mechanism of its efficacy is unknown. Speculations have been made that the efficacy may be due to either the anti-infective or anti-inflammatory effects of this drug. " Gradually (but oh, so slowly!) more and more doctors and researchers are leaning towards the use of antibiotics. I've definitely seen a change in attitude, both on a national scale and in our local area. Thanks for all of your help! ~Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 I just picked up on the question about Dr Chiu treating rheumatic patients in New Zealand and thought I would put my two bits in! My daughter has RA and we started antibiotic therapy with Dr Chiu and were successful although he continued her on Salazapyrin at the same time. She was in complete remission until October last year (approx 2 1/2 yrs) when she flared badly again but Dr Chiu was pushing me to put her on Methotrexate or Arava to reign it in again but being so committed to AP I resisted that fiercely. He reluctantly prescribed Erythromycin but it just wasn't working. We are living in Sydney at present and in February found an excellent AP doctor here and haven't looked back. Started on Clarithromycin and had initial improvement and recently changed to Doxy and the improvement is spiralling on! We are due to go back to NZ at the end of the year which leaves me with a dilemma because I'm not sure Dr Chiu is as committed to AP as he obviously once was and I don't know of anyone else over there to fill his place. I wonder if he succumbed to the anti-AP medical pressure or whether he decided AP wasn't getting the results he expected? Remains to be seen. Caroline Stronge. Re: rheumatic Wegner's granulomatosis? Thank you, Ethel - I thought I remembered the topic had come up several years ago during the time Dr. Chiu posted. He was such a great resource for this group! I trust he is still successfully treating rheumatic patients in New Zealand? As for Wegener's - it indeed sounds nasty. Interestingly, in looking it up on www.emedicine.com I found several articles, one of which hinted that antibiotics might be used in keeping people in remission (after they've been treated with conventional immune suppressants.) Here's a snipet of the actual site at: http://www.emedicine.com/med/topic2401.htm " Daily treatment with the antibiotic sulfamethoxazole/trimethoprim has reduced relapse rates in published series. A placebo-controlled study published in 1996 (Stageman, 1996) demonstrated that 82% of patients receiving cotrimoxazole remained in remission compared to 60% of those in the placebo group. The mechanism of its efficacy is unknown. Speculations have been made that the efficacy may be due to either the anti-infective or anti-inflammatory effects of this drug. " Gradually (but oh, so slowly!) more and more doctors and researchers are leaning towards the use of antibiotics. I've definitely seen a change in attitude, both on a national scale and in our local area. Thanks for all of your help! ~Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Hi Caroline~ I'm happy to hear that your " mother bear instincts " paid off! Good for you in being your daughter's best advocate. Thanks also for the input on Dr. Chiu. It sounds like it might be a good idea to have a chat with him upon your return to NZ. He still may be supportive of the AP - but just might need to hear about your daughter's improvement on Biaxin (Clarithromycin) and then Doxycyxline. (I'm still doing very well on Biaxin and Minocin.) Maybe Dr. Chiu felt it necessary to combine AP with immune suppressants - I don't know. Please let us know what you find out at the end of the year. Take care~ ~Connie > I just picked up on the question about Dr Chiu treating rheumatic patients in New Zealand and thought I would put my two bits in! My daughter has RA and we started antibiotic therapy with Dr Chiu and were successful although he continued her on Salazapyrin at the same time. ..... Quote Link to comment Share on other sites More sharing options...
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