Guest guest Posted August 18, 1999 Report Share Posted August 18, 1999 The doctor closest to you experienced in this therapy is Eleazer Kadile, M.D., 1538 Bellevue St., Green Bay WI 54311 - phone 920-468-9442 tracyanddan@... wrote: > > From: tracyanddan@... > > My daughter has recently been diagnosed with JRA. I'm interested in anti-biotic therapy. Can anyone put me in touch with a Dr. willing to treat this with this therapy? I live in Superior, WI. > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 1999 Report Share Posted September 26, 1999 Yes, there are children with JRA who have benefitted from the AP (antibiotic protocol) and we have had parents of JRA patients on this list. If any of them are still lurking out there, perhaps they would be best to relay their experiences for you. In the interim, I'd recommend you read the book The New Arthritis Breakthrough, which explains in plain language the theory behind this treatment, as well as providing a number of case histories of patients who recovered using the AP. If I'm not mistaken, I believe at least one case history in the book was that of a JRA patient. You should also check out the website at www.rheumatic.org, which contains a great deal of info on this treatment, including an FAQ section as well as the doctor's protocol for prescribing the treatment. You should be aware that many rheums are reluctant to try this treatment and most of us have had to fight our doctors for the right to try it so having a doctor initially opposed to the idea is not unusual. Do the reading, get informed then you will be better prepared to fight for the treatment you want for your child. This group also has a list of doctors willing to prescribe the treatment so if you choose to pursue it and still face opposition from your doctor, you can most likely find a new doctor here. Good luck and feel free to send any questions you have to the group, they are a wealth of information. a Peden Hescock@... wrote: > > From: Hescock@... > > My 8 year old has been diagnosed with Systemic Onset JRA. Her Dr. says that > the antibiotic therapy is " inappropriate " and would not work anyway since > there is not " infectious agent " at work. Has anyone heard of using the > antibiotic therapy, or a modified version, for children? > > Hescock@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 1999 Report Share Posted September 26, 1999 Oops, you're right, I forgot about that (damn brain fog). I believe the antibiotic that's used in children is erythromycin (sp?) instead of minocycline. Thanks for pointing that out. a Peden Probert wrote: > > From: " Probert " <jpro@...> > > I would second a's advice to get the book. I know tetracyclines are not > recommended for use in children under 8 because of the potential of tooth > staining. Maybe that is what the doctor meant by " inappropriate. " In " The > New Arthritis Breakthrough " Dr. Brown mentions the specific antibiotic he > used in children. Henry Scammell will be listed as the author and it is > readily available at libraries and bookstores. > > Hope some of the parents of kids with JRA will chime in, but for now, maybe > this will help. From what I remember in the book, children are often > especially responsive to this treatment. > > Jean > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 1999 Report Share Posted September 26, 1999 Oops, you're right, I forgot about that (damn brain fog). I believe the antibiotic that's used in children is erythromycin (sp?) instead of minocycline. Thanks for pointing that out. a Peden Probert wrote: > > From: " Probert " <jpro@...> > > I would second a's advice to get the book. I know tetracyclines are not > recommended for use in children under 8 because of the potential of tooth > staining. Maybe that is what the doctor meant by " inappropriate. " In " The > New Arthritis Breakthrough " Dr. Brown mentions the specific antibiotic he > used in children. Henry Scammell will be listed as the author and it is > readily available at libraries and bookstores. > > Hope some of the parents of kids with JRA will chime in, but for now, maybe > this will help. From what I remember in the book, children are often > especially responsive to this treatment. > > Jean > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 1999 Report Share Posted September 26, 1999 I would second a's advice to get the book. I know tetracyclines are not recommended for use in children under 8 because of the potential of tooth staining. Maybe that is what the doctor meant by " inappropriate. " In " The New Arthritis Breakthrough " Dr. Brown mentions the specific antibiotic he used in children. Henry Scammell will be listed as the author and it is readily available at libraries and bookstores. Hope some of the parents of kids with JRA will chime in, but for now, maybe this will help. From what I remember in the book, children are often especially responsive to this treatment. Jean ---------- >From: a Peden <paula.peden@...> >Hescock@..., Arthritis Support <rheumaticonelist> >Subject: Re: rheumatic JRA >Date: Sun, Sep 26, 1999, 4:31 PM > > From: a Peden <paula.peden@...> > > Yes, there are children with JRA who have benefitted from the AP > (antibiotic protocol) and we have had parents of JRA patients on this > list. If any of them are still lurking out there, perhaps they would be > best to relay their experiences for you. In the interim, I'd recommend > you read the book The New Arthritis Breakthrough, which explains in > plain language the theory behind this treatment, as well as providing a > number of case histories of patients who recovered using the AP. If I'm > not mistaken, I believe at least one case history in the book was that > of a JRA patient. You should also check out the website at > www.rheumatic.org, which contains a great deal of info on this > treatment, including an FAQ section as well as the doctor's protocol for > prescribing the treatment. You should be aware that many rheums are > reluctant to try this treatment and most of us have had to fight our > doctors for the right to try it so having a doctor initially opposed to > the idea is not unusual. Do the reading, get informed then you will be > better prepared to fight for the treatment you want for your child. > This group also has a list of doctors willing to prescribe the treatment > so if you choose to pursue it and still face opposition from your > doctor, you can most likely find a new doctor here. Good luck and feel > free to send any questions you have to the group, they are a wealth of > information. > a Peden > > Hescock@... wrote: >> >> From: Hescock@... >> >> My 8 year old has been diagnosed with Systemic Onset JRA. Her Dr. says that >> the antibiotic therapy is " inappropriate " and would not work anyway since >> there is not " infectious agent " at work. Has anyone heard of using the >> antibiotic therapy, or a modified version, for children? >> >> Hescock@... >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 1999 Report Share Posted September 27, 1999 I would like to add to all the rest that the antibiotic used for children is Erythramycin which cannot be used for a few of the mycoplasmas. It would be a good idea to send your childs blood sample for a PCR test which would tell what type of mycoplasma they have. It is really important to send it to the right lab, not all do this correctly. Best of luck cooky Probert wrote: > > From: " Probert " <jpro@...> > > I would second a's advice to get the book. I know tetracyclines are not > recommended for use in children under 8 because of the potential of tooth > staining. Maybe that is what the doctor meant by " inappropriate. " In " The > New Arthritis Breakthrough " Dr. Brown mentions the specific antibiotic he > used in children. Henry Scammell will be listed as the author and it is > readily available at libraries and bookstores. > > Hope some of the parents of kids with JRA will chime in, but for now, maybe > this will help. From what I remember in the book, children are often > especially responsive to this treatment. > > Jean > > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 1999 Report Share Posted September 28, 1999 We have heard from many people whose children have recovered from JRA on antibiotics. Erythromycin is usually used for children. The dose for an 8 year old is around 400mg of Eryped (liquid erythromycin). A nine year old boy here had JRA so severely he couldn't feed himself or go to the toilet by himself. His mother is a nurse and we got her information from Dr. Franco, a rheumatologist in Riverside, California, who advised he should start erythromycin. In four months, Simeon was fully recovered and is now on a maintenance dose of erythromycin. I believe that Dr. Franco has treated 13 or more children for JRA with erythromycin. You might like to call him on 909-788-0850. We maintain a list of doctors and might be able to help with one in your area. Your doctor is adhering to the auto-immune theory of JRA. Our doctors believe that the disease is triggered by infection, hence the low-dose antibiotic approach. the fact that the children treated with antibiotics are recovering says that they are right. Let us know what information you need and hope to hear back from you soon, Chris. My 8 year old has been diagnosed with Systemic Onset JRA. Her Dr. says that the antibiotic therapy is " inappropriate " and would not work anyway since there is not " infectious agent " at work. Has anyone heard of using the antibiotic therapy, or a modified version, for children? Hescock@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2000 Report Share Posted June 24, 2000 Hi Jan, My 16 year old daughter came down with systemic JRA about 1 year ago. It was terrible--she went from a competitive figure skater to barely being able to walk across the hall. She was in extreme pain and placed on 60 mg. of Prednisone. I, at that time, was totally overwelmed and knew nothing about the dangers of prednisone. However, I researched day and night about what was out there for Jra, and among other things, read the book, " New Athritis Breakthrough and The Road Back. " God was with me because somehow I connected online with who also began to tell me about the antiobiotic therapy for this. I was quite nervous about putting my daughter on them, but made up my mind it was worth trying, and took the chance. Try to find Dr.s who do this--and I was almost persecuted by her current Dr.s who told me I was doing the wrong thing. I also placed her on numerous vitamins and herbal anti-inflammatories. In Jan. she began Minocin orally. In March she started Clinocin IV's along with the oral Minocin. Together with the vitamins and herbals, she slowly began to improve. It was slow and subtle at first, but now we are seeing tremendous progress. She is almost pain-free and down to 20mg of Prednisone and still reducing slowly. It has been less than 5 months on antibiotics and she is getting her life back. Of course, so very many people are praying for her, that I feel sure that is part of her recovery as well. But slowly but surely, my lovely child is getting well. And the Rheumatologist that placed her on prednisone told us it could never happen...I say, never say never, for Miracles still do happen. I hope this will encourage you about AP for JRA. Please feel free to e-mail me directly, if you wish. Best regards to you, Deborah theflowerbox777@... --- pjgunter@... wrote: > I accidentally sent that last message without > completing it. > I'm interested in hearing from anyone about the > success of this > treatment with systemic JRA. Is there anyone out > there using it for > this disease? The rheumatologist said there was good > research on > rheumatoid arthritis, but none on JRA. I'd love to > hear from you. > Jan > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hi Tina, After talking to a longtime family friend we found out that her niece who is 14 has JRA and is being treated very successfully with antibiotics. They go to a doctor in the Boston area who is experienced with this treatment. Hope this helps. Dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Thank You Dee and all that wrote, We are here on a hinge of hope that the Shriners Children's hospital can shed more light on this. Her GP is all for going there, there is so much to know and learn and we may even be the teachers to them... We have nothing to lose going there,and perhaps more ot gain as maybe a mis diagnosis.But there is something derfinatly wrong for her. This will be the second opinion and since it was a Allergist giving the first diagnosis seeing a JRA specialist in Philadelphia will certainly be a privilege as they have more experience than any doctors here in this area. we live in a very limited area and no cities for 60 miles in any direction,alot of older people here and I am sure they treat RA adults but for children it is very hard to get any experienced with this. We are lucky that JRA is one of the conditons that Shriners sees children for so we are positive we will come away with some more answers on what can be done. I tried to connect with a JRA group but only one to be found has not had messages posted since last Summer , so here I am with you all.And learning more about this disease, and also what you as adults are going thru! My heart goes out to you all. I wish it was me in some sense than a child. Thank you for welcoming me to the group and I will be in touch more when we make our visit on t he 21st, just next week! Tina --- LJDSLL@... wrote: > Hi Tina, > > After talking to a longtime family friend we found > out that her niece who is > 14 has JRA and is being treated very successfully > with antibiotics. They go > to a doctor in the Boston area who is experienced > with this treatment. Hope > this helps. > Dee > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2007 Report Share Posted May 13, 2007 Hi Welcome! I find screaming helps!! LOL I use this group and it helps so so much. Great place to vent! Marsha [ ] JRA Hi, I am new ( ). I am 57 years old. I was diagnoised with JRA at 9 months old. It has been a long dark ride. My bigest question is how to handle the frustration, and fatigue of RA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2007 Report Share Posted May 13, 2007 Welcome ,.....Just a quick post to welcome you to the group. Glad your here, looking forward to getting to know you, Tawny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 i have a great-nephew who has had since he was 5 he has never not knoe pain. he is great he plya bb bb track and field tennis golf he lets nothing stop him and all he will take is ibpuroin i dont know how he does it. i feel ashamed when i complain in front of him but he said he understands i guess he has more faith than i do brenda --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
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