Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 HI! My dd had mild/mod plagio and Torticollis. We were told the we didn;t need to treat but could if we wanted to - And I am SO GLAD we did!!! I didn't want to live with the regret of not doing everything that we could, while we could. I am not sure of treatment places in Georgia... but you could look thru old messages with your state or city and see what come up. It is not uncommon for drs to not be proactive and even hesitant to help. We really had to fight to get our drs to even acknowledge a problem. Jen Mom to Luli - 3 yrs old Torticollis, Plagio, Syringomyelia New Member Hello everyone! I somehow came upon this group through a blog, and I am so glad to have found it. Our sweet girl, Mia (almost 9 months), has several issues - including Plagiocephaly and Torticollis. We moved late last year and left our fabulous pediatrician, and our new pediatrician really isn't proactive about any of her medical needs. Unfortunately, we don't really have time to find another one here (and we would need to travel at least an hour).. but I simply don't want to waste time if this can be corrected. She is in physical therapy (for this and other issues) and has been for quite some time, but even with positioning and stretches, her Torticollis is still apparent. Her head tilts down to the left, and the flatness on her head is mostly on the back right and toward the middle, clearly from having more pressure on that side over time because of developmental delays. Our pediatrician basically wrote it off as 'normal' these days due to the back to sleep campaign, and that it's more prevalent now, do more tummy time (does she not think we've tried that?), etc. She agrees that her head is mishapen, she just doesn't want to do anything about it (or anything else). Needless to say, that's not exactly helpful - but this is unfortunately how she approaches all of her issues. Anyway, my question is - has anyone's child dealt with both Torticollis and Plagiocephaly, both in a mild form? How did you treat it? And of course, if anyone lives in Georgia, please let me know! Kim Save money by eating out! Find great dining coupons in your area. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Jen, Thank you so much for sharing your story. And I appreciate the encouragement to get it evaluated, I'm with you on that completely. Since that's exactly what Mia has, would you mind sharing some photos from before and after? I would absolutely love to see them. Kim On Tue, Apr 7, 2009 at 8:39 PM, <JenandLuli@...> wrote: HI!My dd had mild/mod plagio and Torticollis. We were told the we didn;t need to treat but could if we wanted to - And I am SO GLAD we did!!!I didn't want to live with the regret of not doing everything that we could, while we could. I am not sure of treatment places in Georgia... but you could look thru old messages with your state or city and see what come up. It is not uncommon for drs to not be proactive and even hesitant to help. We really had to fight to get our drs to even acknowledge a problem. JenMom to Luli - 3 yrs oldTorticollis, Plagio, Syringomyelia New Member Hello everyone! I somehow came upon this group through a blog, and I am so glad to have found it.Our sweet girl, Mia (almost 9 months), has several issues - including Plagiocephaly and Torticollis. We moved late last year and left our fabulous pediatrician, and our new pediatrician really isn't proactive about any of her medical needs. Unfortunately, we don't really have time to find another one here (and we would need to travel at least an hour).. but I simply don't want to waste time if this can be corrected. She is in physical therapy (for this and other issues) and has been for quite some time, but even with positioning and stretches, her Torticollis is still apparent. Her head tilts down to the left, and the flatness on her head is mostly on the back right and toward the middle, clearly from having more pressure on that side over time because of developmental delays. Our pediatrician basically wrote it off as 'normal' these days due to the back to sleep campaign, and that it's more prevalent now, do more tummy time (does she not think we've tried that?), etc. She agrees that her head is mishapen, she just doesn't want to do anything about it (or anything else). Needless to say, that's not exactly helpful - but this is unfortunately how she approaches all of her issues. Anyway, my question is - has anyone's child dealt with both Torticollis and Plagiocephaly, both in a mild form? How did you treat it?And of course, if anyone lives in Georgia, please let me know!Kim Save money by eating out! Find great dining coupons in your area. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 NO problem! :-) Here she is Before the band (about 3 mo. old) , During the treatment (not wearing the band @10mo. old) and post band (almost 3 years). You can see that her left eye and cheek are smaller when she was a baby... but now she looks good there... You may notice that her head still tilts from the tort. My dd's tort is not muscular so PT doesn't help it. Jen Mom to Luli - 3 yrs old Torticollis, Plagio, Syringomyelia New Member Hello everyone! I somehow came upon this group through a blog, and I am so glad to have found it. Our sweet girl, Mia (almost 9 months), has several issues - including Plagiocephaly and Torticollis. We moved late last year and left our fabulous pediatrician, and our new pediatrician really isn't proactive about any of her medical needs. Unfortunately, we don't really have time to find another one here (and we would need to travel at least an hour).. but I simply don't want to waste time if this can be corrected. She is in physical therapy (for this and other issues) and has been for quite some time, but even with positioning and stretches, her Torticollis is still apparent. Her head tilts down to the left, and the flatness on her head is mostly on the back right and toward the middle, clearly from having more pressure on that side over time because of developmental delays. Our pediatrician basically wrote it off as 'normal' these days due to the back to sleep campaign, and that it's more prevalent now, do more tummy time (does she not think we've tried that?), etc. She agrees that her head is mishapen, she just doesn't want to do anything about it (or anything else). Needless to say, that's not exactly helpful - but this is unfortunately how she approaches all of her issues. Anyway, my question is - has anyone's child dealt with both Torticollis and Plagiocephaly, both in a mild form? How did you treat it? And of course, if anyone lives in Georgia, please let me know! Kim Save money by eating out! Find great dining coupons in your area. Save money by eating out! Find great dining coupons in your area. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Hi Kim, I'm pretty sure that all 50 states work the same way, because it is a federal program. Anyone, including a parent can refer a baby under 3 years old to early intervention. The state will do an evaluation to see if the child NEEDS services, then you will GET services depending on funding from the state. The website for Georgia is http://health.state.ga.us/programs/bcw/faq.asp#1 and the program is called Babies Can't Wait. Generally the guideline is that your baby must have delays or problems in 2 of 5 areas to qualify for services. My son qualified on Tort and one other, so some people on this board might even qualify. (Yes, a specific diagnosis helps, but it is NOT the only way.) Go on the website and call them ASAP, because the eval may take a while to schedule. But the eval. will be good for the next state you move to, so get it no matter what. The good thing about getting connected with early intervention is that these people know local pediatricians and specialists and can often help you in ways you can't imagine. For instance, my PT had worked with other kids in helmets and was good to point out that banding a baby too young can allow regression if tort is present. (In my case it made me try aggressive repo. and harder work on the tort. before banding) Keep hanging in there, your sweetie will be so grateful! Annie > >> > > > >> > >> Hello everyone! I somehow came upon this group through a blog, and I > >> am > >> > >> so glad to have found it. > >> > >> > >> > >> Our sweet girl, Mia (almost 9 months), has several issues - including > >> > >> Plagiocephaly and Torticollis. We moved late last year and left our > >> fabulous > >> > >> pediatrician, and our new pediatrician really isn't proactive about > >> any of > >> > >> her medical needs. Unfortunately, we don't really have time to find > >> another > >> > >> one here (and we would need to travel at least an hour).. but I > >> simply don't > >> > >> want to waste time if this can be corrected. > >> > >> > >> > >> She is in physical therapy (for this and other issues) and has been > >> for > >> > >> quite some time, but even with positioning and stretches, her > >> Torticollis is > >> > >> still apparent. Her head tilts down to the left, and the flatness on > >> her > >> > >> head is mostly on the back right and toward the middle, clearly from > >> having > >> > >> more pressure on that side over time because of developmental delays. > >> Our > >> > >> pediatrician basically wrote it off as 'normal' these days due to the > >> back > >> > >> to sleep campaign, and that it's more prevalent now, do more tummy > >> time > >> > >> (does she not think we've tried that?), etc. She agrees that her head > >> is > >> > >> mishapen, she just doesn't want to do anything about it (or anything > >> else). > >> > >> Needless to say, that's not exactly helpful - but this is > >> unfortunately how > >> > >> she approaches all of her issues. > >> > >> > >> > >> Anyway, my question is - has anyone's child dealt with both > >> Torticollis > >> > >> and Plagiocephaly, both in a mild form? How did you treat it? > >> > >> > >> > >> And of course, if anyone lives in Georgia, please let me know! > >> > >> > >> > >> Kim > >> > >> > >> > >> > >> > > > >> > > > >> > > >> > >> > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Jen, Thank you! What a CUTIE! She reminds me a lot of Miss. Mia. Thank you for sharing! Kim On Wed, Apr 8, 2009 at 12:26 AM, <JenandLuli@...> wrote: NO problem! :-)Here she is Before the band (about 3 mo. old) , During the treatment (not wearing the band @10mo. old) and post band (almost 3 years).You can see that her left eye and cheek are smaller when she was a baby... but now she looks good there... You may notice that her head still tilts from the tort. My dd's tort is not muscular so PT doesn't help it. JenMom to Luli - 3 yrs oldTorticollis, Plagio, Syringomyelia New Member Hello everyone! I somehow came upon this group through a blog, and I am so glad to have found it.Our sweet girl, Mia (almost 9 months), has several issues - including Plagiocephaly and Torticollis. We moved late last year and left our fabulous pediatrician, and our new pediatrician really isn't proactive about any of her medical needs. Unfortunately, we don't really have time to find another one here (and we would need to travel at least an hour).. but I simply don't want to waste time if this can be corrected. She is in physical therapy (for this and other issues) and has been for quite some time, but even with positioning and stretches, her Torticollis is still apparent. Her head tilts down to the left, and the flatness on her head is mostly on the back right and toward the middle, clearly from having more pressure on that side over time because of developmental delays. Our pediatrician basically wrote it off as 'normal' these days due to the back to sleep campaign, and that it's more prevalent now, do more tummy time (does she not think we've tried that?), etc. She agrees that her head is mishapen, she just doesn't want to do anything about it (or anything else). Needless to say, that's not exactly helpful - but this is unfortunately how she approaches all of her issues. Anyway, my question is - has anyone's child dealt with both Torticollis and Plagiocephaly, both in a mild form? How did you treat it?And of course, if anyone lives in Georgia, please let me know!Kim Save money by eating out! Find great dining coupons in your area. Save money by eating out! Find great dining coupons in your area. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Hi Kim, My son also has tort and plagio. We didn't get banded until 9 months - similar pediatrician story. I'm not in your area, but I just wanted to let you know that we were also in your shoes. We tried repo, but it was so difficult with the tort. My son's tort was not resolved by the time we banded, but knew we needed to do it before it was too late. We still went to PT for the tort, as well as an Osteopath. We would take his band off to do the stretches. He was in his band for 5 months, plagio was down to 2mm, so now we're just focusing on the tort. The tort has gotten so much better because he started crawling, then walking. It's not too late to band. We started at 8mm, and got good correction. Hope this helps. Kim Mommy to Jimmy Starband grad 4/2/09 tort and plagio New Deals on Dell Netbooks - Now starting at $299 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Kim, Your story is really encouraging! Did your son have mild Plagio or was it more severe? Thanks!! Kim (hehe) On Wed, Apr 8, 2009 at 11:35 AM, <kingstontchr2@...> wrote: Hi Kim,My son also has tort and plagio. We didn't get banded until 9 months - similar pediatrician story. I'm not in your area, but I just wanted to let you know that we were also in your shoes. We tried repo, but it was so difficult with the tort. My son's tort was not resolved by the time we banded, but knew we needed to do it before it was too late. We still went to PT for the tort, as well as an Osteopath. We would take his band off to do the stretches. He was in his band for 5 months, plagio was down to 2mm, so now we're just focusing on the tort. The tort has gotten so much better because he started crawling, then walking. It's not too late to band. We started at 8mm, and got good correction. Hope this helps. KimMommy to JimmyStarband grad 4/2/09tort and plagio New Deals on Dell Netbooks - Now starting at $299 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 I'm not very good at taking pictures of heads, apparently. But I tried! This shows her left tort... From the back.. if you can tell (and I don't blame you if you can't, I suck at this!) there's 'more head' on the left side, if that makes any sense at all! Her flatness seems to be a bit across the back but also mostly on the right side (which is a weird angle to try to capture). Has anyone had that happen? More from the back... -Kim On Wed, Apr 8, 2009 at 11:58 AM, K S <trying4two@...> wrote: Kim, Your story is really encouraging! Did your son have mild Plagio or was it more severe? Thanks!! Kim (hehe) On Wed, Apr 8, 2009 at 11:35 AM, <kingstontchr2@...> wrote: Hi Kim,My son also has tort and plagio. We didn't get banded until 9 months - similar pediatrician story. I'm not in your area, but I just wanted to let you know that we were also in your shoes. We tried repo, but it was so difficult with the tort. My son's tort was not resolved by the time we banded, but knew we needed to do it before it was too late. We still went to PT for the tort, as well as an Osteopath. We would take his band off to do the stretches. He was in his band for 5 months, plagio was down to 2mm, so now we're just focusing on the tort. The tort has gotten so much better because he started crawling, then walking. It's not too late to band. We started at 8mm, and got good correction. Hope this helps. KimMommy to JimmyStarband grad 4/2/09tort and plagio New Deals on Dell Netbooks - Now starting at $299 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 You daughter is really cute and I agree that one can hardly see the cheek asymmetry! One more thing, I am sorry I never ended up posting my son's pictures to show the height of the helmet -- my husband for some reason doesn't want the pictures to be posted. But I would post the before and after scans once we are done or maybe in between scans I if we have them done. we are going to our 4 weeks check up tomorrow. I would be bringing the issue of the helmet being trimmed to high again. ~Zhyldyz From: "JenandLuli@..." <JenandLuli@...>Plagiocephaly Sent: Wednesday, April 8, 2009 1:26:46 AMSubject: Re: New Member NO problem! :-)Here she is Before the band (about 3 mo. old) , During the treatment (not wearing the band @10mo. old) and post band (almost 3 years).You can see that her left eye and cheek are smaller when she was a baby... but now she looks good there... You may notice that her head still tilts from the tort. My dd's tort is not muscular so PT doesn't help it. JenMom to Luli - 3 yrs oldTorticollis, Plagio, Syringomyelia New Member Hello everyone! I somehow came upon this group through a blog, and I am so glad to have found it.Our sweet girl, Mia (almost 9 months), has several issues - including Plagiocephaly and Torticollis. We moved late last year and left our fabulous pediatrician, and our new pediatrician really isn't proactive about any of her medical needs. Unfortunately, we don't really have time to find another one here (and we would need to travel at least an hour).. but I simply don't want to waste time if this can be corrected.She is in physical therapy (for this and other issues) and has been for quite some time, but even with positioning and stretches, her Torticollis is still apparent. Her head tilts down to the left, and the flatness on her head is mostly on the back right and toward the middle, clearly from having more pressure on that side over time because of developmental delays. Our pediatrician basically wrote it off as 'normal' these days due to the back to sleep campaign, and that it's more prevalent now, do more tummy time (does she not think we've tried that?), etc. She agrees that her head is mishapen, she just doesn't want to do anything about it (or anything else). Needless to say, that's not exactly helpful - but this is unfortunately how she approaches all of her issues. Anyway, my question is - has anyone's child dealt with both Torticollis and Plagiocephaly, both in a mild form? How did you treat it?And of course, if anyone lives in Georgia, please let me know!Kim Save money by eating out! Find great dining coupons in your area. Save money by eating out! Find great dining coupons in your area. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 , What asymettry do you notice? I just want an outside perspective.. I tried looking at her in the mirror, but since I look at her all day every day.. it may be more difficult for me to notice if things are off and I feel like the tort throws things off even more. From what you see, if it was your child, would you get it checked? I've looked a bit into it and I think it's worth the 3 hour drive to CT.. the reviews that I've found just seem so much better. The worst that can happen is that they don't think it's severe enough to band and then we know, right? But if we're going to have to do it, I only want to do it once, ya know? I'm going to bring it up with her PT on Friday, but either way.. I'm making an appointment. We received a list today of our choices for our next duty station, and while we won't know until next week, our first CHOICE is San Diego.. and if we went there (~July), I'm assuming they must have a location in CA (it won't load up for me right now to check). Our second choice is Japan.. and that may make things more complicated, I'm not sure if they're there yet! And our third choice is probably going to be WA or VA, so I'll have to check those. Lastly, for those of you who dealt with brach/tort or plagio/tort.. did fixing the skull help the tort? Or does fixing the tort help the head? Kim On Wed, Apr 8, 2009 at 10:29 PM, christineashok <christineashok@...> wrote: Hi Kim.she is very cute. I can see the tort since it is obvious, but also the asymmetry. Have you decided if you're going to band or what band to use? I think you were debating on CT vs Hanger. Did you get any info about the hanger office you would be using? I think she would benefit from a band, and it is really easier to do than you expect. The first week or two can be tough but after that it is just part of your routine. -christinesydney, 3 yrs, starband grad > >> >> Hi Kim,> >> My son also has tort and plagio. We didn't get banded until 9 months - > >> similar pediatrician story. I'm not in your area, but I just wanted to let> >> you know that we were also in your shoes. We tried repo, but it was so> >> difficult with the tort. My son's tort was not resolved by the time we > >> banded, but knew we needed to do it before it was too late. We still went> >> to PT for the tort, as well as an Osteopath. We would take his band off> >> to do the stretches. He was in his band for 5 months, plagio was down to > >> 2mm, so now we're just focusing on the tort. The tort has gotten so much> >> better because he started crawling, then walking. It's not too late to> >> band. We started at 8mm, and got good correction. Hope this helps. > >> Kim> >> Mommy to Jimmy> >> Starband grad 4/2/09> >> tort and plagio> >> ------------------------------ > >> New Deals on Dell Netbooks - Now starting at $299<http://pr.atwola.com/promoclk/100126575x1219939010x1201342897/aol?redir=http:%2F%2Fad.doubleclick.net%2Fclk%3B213771626%3B35379597%3Bw> > >>> >> > >>> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2009 Report Share Posted April 9, 2009 Lastly, for those of you who dealt with brach/tort or plagio/tort.. did fixing the skull help the tort? Or does fixing the tort help the head? Yes. Fixing the base of the skull seemed to help the tort significantly. It helped to strengthen the unaffected muscle groups properly. Because of that our daughter is almost fixed due to the other muscles taking over and compensating. There is still one problem knot we're working out. Once it's gone her skull will no longer be pulled to the right and everything else should fall into place and correct itself. Elaine, 10 1/2mos, tort & plagio, 2nd helmet since 1/5/09 On Wed, Apr 8, 2009 at 11:36 PM, K S <trying4two@...> wrote: , What asymettry do you notice? I just want an outside perspective.. I tried looking at her in the mirror, but since I look at her all day every day.. it may be more difficult for me to notice if things are off and I feel like the tort throws things off even more. From what you see, if it was your child, would you get it checked? I've looked a bit into it and I think it's worth the 3 hour drive to CT.. the reviews that I've found just seem so much better. The worst that can happen is that they don't think it's severe enough to band and then we know, right? But if we're going to have to do it, I only want to do it once, ya know? I'm going to bring it up with her PT on Friday, but either way.. I'm making an appointment. We received a list today of our choices for our next duty station, and while we won't know until next week, our first CHOICE is San Diego.. and if we went there (~July), I'm assuming they must have a location in CA (it won't load up for me right now to check). Our second choice is Japan.. and that may make things more complicated, I'm not sure if they're there yet! And our third choice is probably going to be WA or VA, so I'll have to check those. Lastly, for those of you who dealt with brach/tort or plagio/tort.. did fixing the skull help the tort? Or does fixing the tort help the head? Kim On Wed, Apr 8, 2009 at 10:29 PM, christineashok <christineashok@...> wrote: Hi Kim.she is very cute. I can see the tort since it is obvious, but also the asymmetry. Have you decided if you're going to band or what band to use? I think you were debating on CT vs Hanger. Did you get any info about the hanger office you would be using? I think she would benefit from a band, and it is really easier to do than you expect. The first week or two can be tough but after that it is just part of your routine. -christinesydney, 3 yrs, starband grad > >> >> Hi Kim,> >> My son also has tort and plagio. We didn't get banded until 9 months -> >> similar pediatrician story. I'm not in your area, but I just wanted to let > >> you know that we were also in your shoes. We tried repo, but it was so> >> difficult with the tort. My son's tort was not resolved by the time we> >> banded, but knew we needed to do it before it was too late. We still went > >> to PT for the tort, as well as an Osteopath. We would take his band off> >> to do the stretches. He was in his band for 5 months, plagio was down to> >> 2mm, so now we're just focusing on the tort. The tort has gotten so much > >> better because he started crawling, then walking. It's not too late to> >> band. We started at 8mm, and got good correction. Hope this helps.> >> Kim> >> Mommy to Jimmy > >> Starband grad 4/2/09> >> tort and plagio> >> ------------------------------ > >> New Deals on Dell Netbooks - Now starting at $299<http://pr.atwola.com/promoclk/100126575x1219939010x1201342897/aol?redir=http:%2F%2Fad.doubleclick.net%2Fclk%3B213771626%3B35379597%3Bw> > >>> >> > >>> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2009 Report Share Posted April 9, 2009 Hi Kim(hee), I think it was considered mild? He started at 8mm. I'm glad you found this group. It's incredible! -Kim Mommy to Jimmy Starband grad 4/2/09 tort & plagio New Deals on Dell Netbooks - Now starting at $299 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2009 Report Share Posted April 23, 2009 Hi , I have scleroderma and Plaquenil was the first med I was given.. I was on it one month when I went to see my Rheumatologist in Boston who believes in A/P. Antibiotic Protocol. As soon as I got to the doctor's office, he put me on Minocin 100mg twice a day. and said he would prefer that I not take the Plaquenil. I have been off it since 2005. In the spring of 2007, I went into remisssion. Please get all the info on Antibiotic Protocol from this site and the RBF (Roadback Foundation). If you can, get the New Arthritis Breadthrough " , written by Henry Scammell and I think also co- written by Dr. MacPherson Brown. They were the pioneers. Most of us are on antibiotics and some of us have even gotten into remission. Most people have no problem with Plaquenil and it does reduce the inflammation. However, there is that small section of people who go on to get eye problems and who needs any further problems. Request, the Frequently Asked Question of Antibiotic Therapy from this site. Print it and keep it next to your Bible. A/P is a God send. Whatever you do, do not go on any steroids or chemo. The side effects are horrible and steroids lose their effect and causes bone lost.. Good luck with your search. Dolores & Mike Rosner From: <srvivr_2001@...> Subject: rheumatic New Member rheumatic Date: Thursday, April 23, 2009, 5:13 PM Hi everybody! I just joined the group and thought I would introduce myself before diving into the message archives. I'm a 22 year old college student and was finally diagnosed with RA on Tuesday, though I've had symptoms for quite a few years now. My lab values are only slightly higher than normal, but my rheumatologist thinks that may be because it's in really early stages or that I may be one of those few people who don't have increased values even though they do have RA. Either way, we decided to start me on Plaquenil as soon as I get the OK from the eye doctor. The earliest appointment I could get is May 7 and it seems like such a long way away! I know the Plaquenil takes a while to start working so I want to start ASAP. No questions yet, but I'm sure as I read more they'll pop up. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 Thanks for the info. My doctor hadn't mentioned AP, but I will ask her about when I see her next. I generally do no like being on antibiotics because they make me feel sick and I'm always worried about super bugs, but anything is worth looking into. I've got a lot of other medical problems, including a history of high dose chemotherapy for leukemia that included MTX (IV,IT and PO) and prednisone. Both gave me pretty bad side effects and I already have bone loss from the prednisone and cognitive issues from the MTX. I'm alive so I'm OK with that, but I told my rheumatologist I'd rather not try them for the RA unless I absolutely have to. At this point I really just want less pain. I've beenin pain most of my life, but not this severe. I'm totally OK with being at a 2 or 3, but I'm literally getting tired of weeks on end of being at 7 or 8. Thanks again for your help! > > > From: <srvivr_2001@...> > Subject: rheumatic New Member > rheumatic > Date: Thursday, April 23, 2009, 5:13 PM > > > > > > > > > Hi everybody! > > I just joined the group and thought I would introduce myself before diving into the message archives. > > I'm a 22 year old college student and was finally diagnosed with RA on Tuesday, though I've had symptoms for quite a few years now. My lab values are only slightly higher than normal, but my rheumatologist thinks that may be because it's in really early stages or that I may be one of those few people who don't have increased values even though they do have RA. Either way, we decided to start me on Plaquenil as soon as I get the OK from the eye doctor. The earliest appointment I could get is May 7 and it seems like such a long way away! I know the Plaquenil takes a while to start working so I want to start ASAP. No questions yet, but I'm sure as I read more they'll pop up. > > ~ > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 , this group is for people who are on the antibiotic protocol for an inflammatory rheumatic disease, or are interested in learning about it. To learn about the therapy, I suggest you read the Frequently Asked Questions section on www.rheumatic.org. Also read some of the stories in the Medical Histories section of people who have or are using this protocol successfully. It would be good to also purchase Henry Scammell's book The New Arthritis Breakthrough. Ethel rheumatic New Member > Hi everybody! > > I just joined the group and thought I would introduce myself before diving > into the message archives. > > I'm a 22 year old college student and was finally diagnosed with RA on > Tuesday, though I've had symptoms for quite a few years now. My lab > values are only slightly higher than normal, but my rheumatologist thinks > that may be because it's in really early stages or that I may be one of > those few people who don't have increased values even though they do have > RA. Either way, we decided to start me on Plaquenil as soon as I get the > OK from the eye doctor. The earliest appointment I could get is May 7 and > it seems like such a long way away! I know the Plaquenil takes a while to > start working so I want to start ASAP. No questions yet, but I'm sure as > I read more they'll pop up. > > ~ > > > > ------------------------------------ > > To unsubscribe, email: rheumatic-unsubscribe@...! Groups > Links > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2009 Report Share Posted April 25, 2009 Asking a doctor about A/P is just about useless, especially if they are Rheumatologists. Read up on the " Infectious Theory " . It says that all these problems are caused by a cell wall deficient bacteria/virus called micoplasmas. The have no cell walls therefore they can morph into different shapes like an L. Being cell walless, they can penetrate your immune cells and take over your entire body. They pull down one organ after another until there is nothing left of you. The best medication for this is Minocin which is derived from the tetracycline family. Tetras have been given to teens for acne for more than 40+ years and no kid ever died from minocin. Rheumatologists are the last ones to acknowledge that an antibiotic will cure these diseases that attack our immune systems. They'd rather give you all the toxic stuff they learn about in school. Go to an Infectious Disease Doc. It took me 4 years to realize that I could not convert Rheumatologists to A/P. When they do, they do it reluctantly to appease you and then take you off after 6 months saying that it didn't work. These micoplasmas are slow growing, therefore they are also slow dying. It takes a long time on antibiotics to kill off the bacterial overload. So 6 months is not enough time. The longer you've been sick, the longer it will take and the more damage occurs. Minocin is a life line. You've been thrown one, now go after it. It is your only hope. You say you now have R/A. And you've been treated for Lupus and other things. Sweetie, it is all the same disease. They are caused by the L shaped cell wall deficient organisms I described above. I beg you to get that information. It could save your life. It is saving mine. Dolores & Mike From: <srvivr_2001@...> Subject: rheumatic Re: New Member rheumatic Date: Friday, April 24, 2009, 3:46 AM Thanks for the info. My doctor hadn't mentioned AP, but I will ask her about when I see her next. I generally do no like being on antibiotics because they make me feel sick and I'm always worried about super bugs, but anything is worth looking into. I've got a lot of other medical problems, including a history of high dose chemotherapy for leukemia that included MTX (IV,IT and PO) and prednisone. Both gave me pretty bad side effects and I already have bone loss from the prednisone and cognitive issues from the MTX. I'm alive so I'm OK with that, but I told my rheumatologist I'd rather not try them for the RA unless I absolutely have to. At this point I really just want less pain. I've beenin pain most of my life, but not this severe. I'm totally OK with being at a 2 or 3, but I'm literally getting tired of weeks on end of being at 7 or 8. Thanks again for your help! > > > From: <srvivr_2001@ ...> > Subject: rheumatic New Member > rheumatic@grou ps.com > Date: Thursday, April 23, 2009, 5:13 PM > > > > > > > > > Hi everybody! > > I just joined the group and thought I would introduce myself before diving into the message archives. > > I'm a 22 year old college student and was finally diagnosed with RA on Tuesday, though I've had symptoms for quite a few years now. My lab values are only slightly higher than normal, but my rheumatologist thinks that may be because it's in really early stages or that I may be one of those few people who don't have increased values even though they do have RA. Either way, we decided to start me on Plaquenil as soon as I get the OK from the eye doctor. The earliest appointment I could get is May 7 and it seems like such a long way away! I know the Plaquenil takes a while to start working so I want to start ASAP. No questions yet, but I'm sure as I read more they'll pop up. > > ~ > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2009 Report Share Posted April 26, 2009 I have been so busy, but I just wanted to send out a quick update. Mia had her DSi done this past Friday, and she'll get her band 2 weeks from them. The DSi/stocking experience was a little... creepy, but mostly hilarious ). I'm really anxious about getting started, and at the same time I can't wait to be done! Kim Mom to Mia DSi @ Charlotte CT on 4/24/09 On Fri, Apr 10, 2009 at 12:35 AM, ambloved <ambloved@...> wrote: Hi Kim,My ortho did the neatest trick when I was there today. He took a very flexible wire (maybe a long piece of garden wire or twist tie might work) made it into a circle, hooked it with tape, then carefully fit it over my guy's head. He marked the ears and nose place on the wire with marker, carefully took it off, got the circle on paper, folded it in half at the nose, then held it up to a bright light and cut around the biggest part. After he cut it out it was really, really obvious just how asymetircal my guy's head was. I sure wish, I had know this before I started repo. I would have recorded how bad his head really got. Annie > > >> > >> Hi Kim,> > >> My son also has tort and plagio. We didn't get banded until 9 months - > > >> similar pediatrician story. I'm not in your area, but I just wanted to let> > >> you know that we were also in your shoes. We tried repo, but it was so> > >> difficult with the tort. My son's tort was not resolved by the time we > > >> banded, but knew we needed to do it before it was too late. We still went> > >> to PT for the tort, as well as an Osteopath. We would take his band off> > >> to do the stretches. He was in his band for 5 months, plagio was down to > > >> 2mm, so now we're just focusing on the tort. The tort has gotten so much> > >> better because he started crawling, then walking. It's not too late to> > >> band. We started at 8mm, and got good correction. Hope this helps. > > >> Kim> > >> Mommy to Jimmy> > >> Starband grad 4/2/09> > >> tort and plagio> > >> ------------------------------> > >> New Deals on Dell Netbooks - Now starting at $299<http://pr.atwola.com/promoclk/100126575x1219939010x1201342897/aol?redir=http:%2F%2Fad.doubleclick.net%2Fclk%3B213771626%3B35379597%3Bw> > > >>> > >> > > >>> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 Welcome Gloria, I am also glad for you that you have found the way to the Road Back. It is a good program, hopefully it will help you too as it has helped me. Feel free to ask any questions you have to this group. They are wonderful people that help each other. Eva From: gloriahsmom <gloriahsmom@...> Subject: rheumatic New Member rheumatic Date: Monday, May 4, 2009, 8:33 AM Hello everyone, I am a new member and wanted to introduce myself. I am a stay at home mom of 3 teenagers. My husband is wonderful and supportive. I have had RA for 12 years. After trying Prednisone and Methotrexate for 3 months, I left the medical route and went alternative for 2 years, unfortunately still used 2 mgs of Prednisone a day. I weaned myself off the Prednisone and have managed with only aspirin for 10 years. Now I am in much pain and inflammation so I need help. I am SO EXCITED to find out about AP!! I have never heard of it. I have an appt. with a doctor recommended by Road Back on Friday so hopefully she can get me on this method. I have read the New Arthritis Breakthrough- WOW! I feel some hope for the first time in a long time! Having a group like this is so great. I will be reading the archives to glean more. Thank you for sharing and networking. It's good to know others are on this journey, too. Pressing on, Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 Welcome Gloria I remember when I was diagnosed with RA, I read all the convential info and there was nothing that offered hope, then I found The New Arthritis Breakthrough, I read it several times, joined this group, read everyone histories most more than once. I was diagnosed in the Fall and I spend that winter mainly in my recliner always reading and planning how I'd get better. I never doubted that it would happen and come spring the pain left and I have been in remission for years. This treatment takes time, but does work and this group is great. Good luck On Mon, May 4, 2009 at 6:33 AM, gloriahsmom <gloriahsmom@...> wrote: > > > Hello everyone, > > I am a new member and wanted to introduce myself. I am a stay at home mom > of 3 teenagers. My husband is wonderful and supportive. I have had RA for 12 > years. After trying Prednisone and Methotrexate for 3 months, I left the > medical route and went alternative for 2 years, unfortunately still used 2 > mgs of Prednisone a day. I weaned myself off the Prednisone and have managed > with only aspirin for 10 years. Now I am in much pain and inflammation so I > need help. I am SO EXCITED to find out about AP!! I have never heard of it. > I have an appt. with a doctor recommended by Road Back on Friday so > hopefully she can get me on this method. I have read the New Arthritis > Breakthrough-WOW! I feel some hope for the first time in a long time! Having > a group like this is so great. I will be reading the archives to glean more. > > Thank you for sharing and networking. It's good to know others are on this > journey, too. > Pressing on, > Gloria > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 Welcome Gloria, I've been a member of this group for about 10 years now, I now mostly lurk, but I keep up with what is going on. I've been in remission for 7 years, 10 years after being diagnosed with RA and starting on the antibiotic protocol. This group was a life saver for me, there was always someone here who knew the answers I was seeking, and to offer support when I needed it. Through this group, I too found a doctor in my State that was experienced in the protocol, and I call her my personal angel. Just know that there will be times when you think this is not working or not working fast enough, but trust me, it does work, and the day will come when you will be pain free and back to your normal active life. Ana in Alaska From: gloriahsmom <gloriahsmom@...> Subject: rheumatic New Member rheumatic Date: Monday, May 4, 2009, 5:33 AM Hello everyone, I am a new member and wanted to introduce myself. I am a stay at home mom of 3 teenagers. My husband is wonderful and supportive. I have had RA for 12 years. After trying Prednisone and Methotrexate for 3 months, I left the medical route and went alternative for 2 years, unfortunately still used 2 mgs of Prednisone a day. I weaned myself off the Prednisone and have managed with only aspirin for 10 years. Now I am in much pain and inflammation so I need help. I am SO EXCITED to find out about AP!! I have never heard of it. I have an appt. with a doctor recommended by Road Back on Friday so hopefully she can get me on this method. I have read the New Arthritis Breakthrough- WOW! I feel some hope for the first time in a long time! Having a group like this is so great. I will be reading the archives to glean more. Thank you for sharing and networking. It's good to know others are on this journey, too. Pressing on, Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 **************2009 3 Free CREDIT SCORES: See Your 3 Credit Scores from All 3 Bureaus FREE! (http://pr.atwola.com/promoclk/100126575x1221797372x1201397989/aol?redir=https:%\ 2F%2Fwww.freescore.com%2FOffers%2FStart%2FFreeCreditRepor tAndScore.aspx%3FID%3D91831F371F138345B53A153F49D4D872%26siteid%3De927580bf7 ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 Hi Gloria, Thank you for introducing yourself. I'm excited for you that you about to start the antibiotic protocol. Don't give up hope in the beginning. it might be a little slow considering you have been on Prednisone. You will have to wean off that as we cannot dampen and boost the immune system at the same time. Get a complete lab work up first to know what you are fighting and to get your body in the optimum shape. The healthier you are, the easier it gets to get through this. Check out your gut for celiac. This can sometimes cause a delay in your recovery. Turn every corner and stay posted. We will collectively hear you and respond. Congratualations on discovering this site and the Roadback site. Consider yourself one of the fortunate ones. The best to you, Dolores & Mike From: gloriahsmom <gloriahsmom@...> Subject: rheumatic New Member rheumatic Date: Monday, May 4, 2009, 9:33 AM Hello everyone, I am a new member and wanted to introduce myself. I am a stay at home mom of 3 teenagers. My husband is wonderful and supportive. I have had RA for 12 years. After trying Prednisone and Methotrexate for 3 months, I left the medical route and went alternative for 2 years, unfortunately still used 2 mgs of Prednisone a day. I weaned myself off the Prednisone and have managed with only aspirin for 10 years. Now I am in much pain and inflammation so I need help. I am SO EXCITED to find out about AP!! I have never heard of it. I have an appt. with a doctor recommended by Road Back on Friday so hopefully she can get me on this method. I have read the New Arthritis Breakthrough- WOW! I feel some hope for the first time in a long time! Having a group like this is so great. I will be reading the archives to glean more. Thank you for sharing and networking. It's good to know others are on this journey, too. Pressing on, Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2009 Report Share Posted May 26, 2009 On my LDN site at link below lists a LDN for FMS discussion group link. FMS-LDN forum link http://ldn.proboards.com/index.cgi?board=looking & action=display & thread=1542 Also, you may want to visit my LDN forum for helpful info. http://ldn.proboards.com/index.cgi? ============ > > > > Hello I am new here. I just heard of this LDN from an article from Dr. > Mercola mails. I want to learn about this, then, ask my doctor for a script. > > I have dealt with RA and FMS since the mid 80's. No drug has helped me so > far. If it did work then it began hurting me. I have had a couple > hospitalizations that nearly killed me. My doc is leery to give me any drug > at this point, but I am hurting, It is hard to determine what is RA and what > is FMS. > > I will read the digest and just observe right now. > > Thanks for your support. > > Deb in Virginia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2009 Report Share Posted May 26, 2009 Hi, welcome to the group. The information that Dr Mercola has recently provided is great. There is a lot of information that is coming from this group too. And be sure to read the info at http://low dose naltrexone.org . There are lots of other websites too, but that is the place to start. There is some information there that you can print out and take to your doctor. I've just started a separate group for those with FMS. It is below my sig-line. And someone else is in the process of setting up a group for people with RA. I've had Fibro since the mid-90's and this is the first drug that has ever helped me. Good luck. Judy HTo better health through knowledgeTaking LDN for Fibromyalgia, Hypothyroid, PCOS and Restless Legs SyndromeLDNforFibro/ From: Deb Trammell Sent: Tuesday, May 26, 2009 1:01 PM low dose naltrexone Subject: [low dose naltrexone] New Member Hello I am new here. I just heard of this LDN from an article from Dr. Mercola mails. I want to learn about this, then, ask my doctor for a script. I have dealt with RA and FMS since the mid 80's. No drug has helped me so far. If it did work then it began hurting me. I have had a couple hospitalizations that nearly killed me. My doc is leery to give me any drug at this point, but I am hurting, It is hard to determine what is RA and what is FMS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2009 Report Share Posted June 2, 2009 Thanks Sue: Me and prednisone are old friends, all 3 of my kids have asthma, as do I when I get a cold, flu etc. My experience has always been 60 mgs for 5 days though, then stopping until the next uncontrolled asthma attack. My daughter got the moon face, so we were very stingy in using it. My deal is that I gained so much weight after my hysterectomy, and with my already slow metabolism, its a pain to loose weight, which I am SURE doesnt help RA. I feel fantastic, after 2 weeks on 5 mgs, only now I am noticing break-thrus, with my hands and feet, I am trying to tolerate. I hate all these meds, truly, pills, pills and more pills. There has got to be a better way. I am also thinking about Tai-Chi, cause its gentle and if you are moving, the stiffness is not so bad, when I rest, I stiffen ALOT (especially over night - UGH!!!) > Hello everyone: > > I am a 50 yr old mother of three. I have hashimoto's thyroiditis, I > had a hystrectomy about 2 years ago, so about 3 months ago, when I > began to have what I can only describe as searing, burning bone pain > in the long bones of both my legs, I told my primary care doc, she > immediately sent me to my endocrinologist who then upped my > synthroid, to no avail. The searing paid then traveled down to my > knees and then I could no longer sleep, from the throbbin pain, then > I was so dead tired, I almost couldnt function, I took off a week > from work and sleep for 4 days straight, then my hands becme stiff > anbd hurt, the bones on the top of one foot were hurting, i felt > like my foot was going to break, I was miserable and became secrelty > very scared (without telling my family), so I went back to my > doctor, she then called a rhemuatologist who suggested cartain blood > tests since autoimmune diseases can causes various ailments, sure > enuf, my rheumatoid factor was sky high and I also had a serious Vit > D deficiency. Fst forward to today, after I see the > rhemuatologist. She started me on 5 mgs a day of prednisone, and I > feel so much better, she added 50,00 unit of vit d and I started > 2,000 a dy of fish oil and calcium. I added dark berries every day > to my diet (cherries, blueberries, blackberry). I am afraid of > prednisone, because my kids are asthmatics and I know its not > something to stya on for long. It has been 3 weeks, and I get > breakthru in my back and hands, but I feel like a million times > better. This week I am starting methotrexate (after some liver > testing) and I am afraid of the side effects I hear about, but the > sering pain without the drug is so bad< i cant deal with the pain. > I saw pain management specialist. She gave me Flexoril and Mobic, > but it didnt do anything, stopped even making me sleepy after awhile > at night (so at least it put me to sleep for a few days) > > I would appreciate any tips or comments. > > Thanks sincerely > > OKD > ------------------------------------ Quote Link to comment Share on other sites More sharing options...
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