Guest guest Posted June 5, 2001 Report Share Posted June 5, 2001 I'll do my best, Vicki :-) As I recall, it was discussed on the rheumatic list (I'll ask over there if someone has the exact link or info). I'm not sure that you could say that the Arthritis Foundation "promotes" the use of antibiotics for arthritis, though......more like listing the antibiotic, Minocin, along with other treatments. In any case, for those of us who use them, it was a huge victory. For years, the foundation refused to listen to patient's stories, or anything dealing with an infectious cause to arthritis. They are at least listing Minocin.....maybe justifying it for its cartilage rebuilding properties, or its anti-inflammatory capabilities? I'm sure you've looked through the AF's website.....but it seems I recall something about the use of Minocin being mentioned in some publication put out by the AF which listed the medications used in treatment. I'll see what I can find. I hope your tests weren't too hard on you......you had them today, right? Take care, Connie Need Info Connie... I think at one time you said that the Arthritis Foundationpromotes the use of antibiotics for arthritis.... (that's if I rememberthis correctly) If so, can you please find me the article regardingthis so I can print it for my doctor? I'm coming up blank on this one.Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2001 Report Share Posted June 5, 2001 I think I found it, Vicki. I remembered someone mentioned that Minocin was listed in a drug guide....and there it is, on the Arthritis Foundation's website at: http://www.arthritis.org/Answers/DrugGuide/default.asp http://www.arthritis.org/Answers/DrugGuide/dmards.asp#Minocin So.....as I suspected, you couldn't really say that they "promote" the idea, but none the less, sort of accept it :-) Did you see the post I sent regarding the National Jewish Medical Center? That might be something to take to your doctor....maybe it would be a good idea for you to actually highlight the part where it talks about mycoplasma and rheumatic disease and also the part where it mentions that interstitial lung disease can also mimic an mycoplasma infection. Good luck and take care, Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2001 Report Share Posted June 5, 2001 Hi again.....sorry I can't seem to gather all of the information and put it into one post...... I also found the following mention of Minocin in their drug guide: http://www.arthritis.org/Answers/DrugGuide/dmards_about.asp "One drug that has not been approved for arthritis treatment, but is being used increasingly for both rheumatoid arthritis and osteoarthritis is the antibiotic minocycline. Because of its increasingly widespread use and effectiveness in many patients, we have chosen to include it in the Drug Guide." Need Info Connie... I think at one time you said that the Arthritis Foundationpromotes the use of antibiotics for arthritis.... (that's if I rememberthis correctly) If so, can you please find me the article regardingthis so I can print it for my doctor? I'm coming up blank on this one.Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2001 Report Share Posted June 6, 2001 I know at the Juvenile Arthritis Foundation Conference in Orlando this past August, a Doctor was running a session on how to find accurate information on the internet for your child's disease. She used a web site by a Dr. that is well known for his Antibiotic Protocol used in Myositis diseases and where not to look! Sorry Connie, the Dr. who had the web site name escapes me at the moment. She turned up her nose and said, " That is a Dr. I've never even heard of. That would not be a place to look for accurate information " . She went on to explain that he was probably trying to sell something and to be aware of web sites that use medical info. as a way to promote their products. I had heard of him through Connie! I know that the Arthritis Juvenile Assoc. could be very different from the Adult association but no one mentioned it at the Juvenile conference. Hugs, Cari >From: anzavic@... >Reply-To: OurMyositis >To: OurMyositis >Subject: Need Info >Date: Tue, 5 Jun 2001 13:16:32 -0700 (PDT) > > >Connie... I think at one time you said that the Arthritis Foundation >promotes the use of antibiotics for arthritis.... (that's if I remember >this correctly) If so, can you please find me the article regarding >this so I can print it for my doctor? I'm coming up blank on this one. > >Vicki > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2001 Report Share Posted June 6, 2001 Hi Cari :-) Oh, I sure wish I had been at that session!! I would have told her that there are more success stories using the antibiotic protocol than she will ever see with her immune suppressing, toxic medicines that only address the symptoms, but not the disease. In the medical field, I've come to realize that these arrogant and biased opinions can really get in the way, and that patients are the ones who lose out. The original doctor who started me on this protocol has the highest credentials.....graduated top of her class as an undergraduate and graduate in Medicine in Texas, residency at Stanford Medical School, has taught at the medical level, won numerous awards....etc. My point is.......she wasn't trying to sell me anything (except the chance to get better) and her credentials are impeccable. The same goes for Dr. Trentham, from Harvard University......he also uses Minocin to treat these diseases. He even did the clinical trial for Minocin and scleroderma. Most likely the doctor at the conference was referring to either Dr. Mercola's website at www.mercola.com or Dr. Mirkin at www.drmirkin.com or maybe Dr. Franco's but I don't think his was up and running last year...at www.thearthritiscenter.com Each one of these individuals takes the utmost of care to only print what they have found to work. They each site references to back up their facts. Each is very outspoken and uses the therapy with remarkable success....and that's why they keep going with it, because they can go home at night knowing they are actually helping their patients to get better. Cari, I know you have had success with 's treatment.....and I am thrilled and hope he knows that there are more people rooting and praying for him that he will never know. I pray for all of you in this group, as others have prayed for me. I also understand how you feel you can trust your doctor to give you the very best.....but, other than , and maybe Mike, and .....can anyone else say that they have recovered a true quality of life? I can, and that's why I feel like kicking and biting all the doctors who so arrogantly disregard this therapy. Finally, even the Arthritis Foundation (for adults) is beginning to listen. I only hope it's not too much longer before the Juvenile Foundation sheds its bias. Whew!!! Thank you all....at least the one's who are still putting up with my rant, for letting me say my piece. I really care for each and every one of you. Whatever path you take, I pray you regain your health and happiness. Sending hugs to all of you, Connie if any of you want to call me....please feel free to do so....(509) 943-6137 Re: Need Info I know at the Juvenile Arthritis Foundation Conference in Orlando this past August, a Doctor was running a session on how to find accurate information on the internet for your child's disease. She used a web site by a Dr. that is well known for his Antibiotic Protocol used in Myositis diseases and where not to look! Sorry Connie, the Dr. who had the web site name escapes me at the moment. She turned up her nose and said, " That is a Dr. I've never even heard of. That would not be a place to look for accurate information " . She went on to explain that he was probably trying to sell something and to be aware of web sites that use medical info. as a way to promote their products. I had heard of him through Connie! I know that the Arthritis Juvenile Assoc. could be very different from the Adult association but no one mentioned it at the Juvenile conference. Hugs, Cari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2001 Report Share Posted June 6, 2001 A couple more things.....I've heard through the rheuamtic group that both the Mayo Clinic and s Hopkins offer this treatment.....most likely they don't " promote " it, but I'm guessing that if you can find the right doctor, you can ask for the antibiotic protocol(AP). Vicki, maybe we can find something at those sites? Also....if that doctor at the Juvenile Foundation Conference was aware of just how many doctors around the world are using the AP, maybe the light would come on and she would suddenly come up with the idea all by heself.....grrrr again :-) Vicki...your post just came through. I wish I could help you get through all of this. Doesn't it seem like the chills you just mentioned are a response to an infection?? ....as in mycoplasma? That's what most of the AP docs suggest. OK, I'll let you get back to your bed. Please take care, and check in when you can, OK? Hugs to all, Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2001 Report Share Posted June 6, 2001 Connie, The session wasn't about different treatments but how to use the internet in an effective way. I wasn't impressed with the info. we received. How else do we learn more about these diseases and their treatments if we don't venture into unknown sites. We are adults and hopefully have the brains to pick and choose between advertisements and valuable information. is having very few side effects from the Prednisone withdrawel. He took his last dose last Thurs. He fell apart a few times yesterday and then got very angry with himself. He layed around all day today but doesn't seem to be nauseous and hasn't complained of any headaches. Appetitte is still good too. Maybe it won't be so bad this time. has had tremendous success with Prednisone. He never had to go to Methotrexate. You can bet, however, that if should flare, I would absolutely look into Antibiotic Therapy. No doubt. My mother and I were talking about it today. It just makes sense. Stay up there on your soap box. I'm listening. Hugs, Cari >From: jhache@... >Reply-To: OurMyositis >To: OurMyositis >Subject: Re: Need Info >Date: Wed, 06 Jun 2001 22:54:43 -0000 > >Hi Cari :-) > >Oh, I sure wish I had been at that session!! I would have told her >that there are more success stories using the antibiotic protocol >than she will ever see with her immune suppressing, toxic medicines >that only address the symptoms, but not the disease. In the medical >field, I've come to realize that these arrogant and biased opinions >can really get in the way, and that patients are the ones who lose >out. > >The original doctor who started me on this protocol has the highest >credentials.....graduated top of her class as an undergraduate and >graduate in Medicine in Texas, residency at Stanford Medical School, >has taught at the medical level, won numerous awards....etc. My >point is.......she wasn't trying to sell me anything (except the >chance to get better) and her credentials are impeccable. > >The same goes for Dr. Trentham, from Harvard University......he >also uses Minocin to treat these diseases. He even did the clinical >trial for Minocin and scleroderma. Most likely the doctor at the >conference was referring to either Dr. Mercola's website at >www.mercola.com or Dr. Mirkin at www.drmirkin.com or maybe Dr. >Franco's but I don't think his was up and running last year...at >www.thearthritiscenter.com Each one of these individuals takes the >utmost of care to only print what they have found to work. They each >site references to back up their facts. Each is very outspoken and >uses the therapy with remarkable success....and that's why they keep >going with it, because they can go home at night knowing they are >actually helping their patients to get better. > >Cari, I know you have had success with 's treatment.....and I am >thrilled and hope he knows that there are more people rooting and >praying for him that he will never know. I pray for all of you in >this group, as others have prayed for me. I also understand how you >feel you can trust your doctor to give you the very best.....but, >other than , and maybe Mike, and .....can anyone else say >that they have recovered a true quality of life? I can, and that's >why I feel like kicking and biting all the doctors who so arrogantly >disregard this therapy. > >Finally, even the Arthritis Foundation (for adults) is beginning to >listen. I only hope it's not too much longer before the Juvenile >Foundation sheds its bias. > >Whew!!! Thank you all....at least the one's who are still putting up >with my rant, for letting me say my piece. I really care for each >and every one of you. Whatever path you take, I pray you regain your >health and happiness. > >Sending hugs to all of you, > >Connie >if any of you want to call me....please feel free to do so....(509) >943-6137 > > Re: Need Info > > >I know at the Juvenile Arthritis Foundation Conference in Orlando >this past >August, a Doctor was running a session on how to find accurate >information >on the internet for your child's disease. She used a web site by a >Dr. that >is well known for his Antibiotic Protocol used in Myositis diseases >and >where not to look! Sorry Connie, the Dr. who had the web site name >escapes >me at the moment. She turned up her nose and said, " That is a Dr. >I've >never even heard of. That would not be a place to look for accurate >information " . She went on to explain that he was probably trying to >sell >something and to be aware of web sites that use medical info. as a >way to >promote their products. I had heard of him through Connie! I know >that the >Arthritis Juvenile Assoc. could be very different from the Adult >association >but no one mentioned it at the Juvenile conference. >Hugs, >Cari > > > > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2001 Report Share Posted June 6, 2001 Hi Cari :-) Thanks for your post......I think you're right....how else *do* we learn about these diseases and treatments?....The doctors sure don't have much time to explain things....even the ones who would gladly sit down and explain things don't have the time. I think the ones who have a problem with our internet "research" are just a little bit paranoid and threatened, anyway. Remember the days when we would go to the doctor and blindly accept whatever they recommended?.....Well, I think that scenario is changing at warp speed. I'm happy to hear that is handling the Pred withdrawl.....please give that sweet child a big hug from me, OK? Cari, you've done such a remarkable job in keeping 's life as normal as possible, and that's a huge achievement. God forbid, should he flare and you want to go for the AP, just know that it has been successfully used on children. Usually, Erythromycin is used, instead of Minocin, to avoid the possibility of teeth staining. I think Minocin can be used if the child is at least 8 years old, generally. Ok.....I've settled down, now :-) Thanks for everything, Cari. Take care, Connie Re: Need Info>>>I know at the Juvenile Arthritis Foundation Conference in Orlando>this past>August, a Doctor was running a session on how to find accurate>information>on the internet for your child's disease. She used a web site by a>Dr. that>is well known for his Antibiotic Protocol used in Myositis diseases>and>where not to look! Sorry Connie, the Dr. who had the web site name>escapes>me at the moment. She turned up her nose and said, "That is a Dr.>I've>never even heard of. That would not be a place to look for accurate>information". She went on to explain that he was probably trying to>sell>something and to be aware of web sites that use medical info. as a>way to>promote their products. I had heard of him through Connie! I know>that the>Arthritis Juvenile Assoc. could be very different from the Adult>association>but no one mentioned it at the Juvenile conference.>Hugs,>Cari>>>>>_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.