Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Hi Kathy, Sending prayers for you and your daughter! Mycoplasma testing is recommended, although some may have difficulty obtaining the testing, so go on the treatment regardless. Dr Chiu just posted a letter earlier today, that points out the value of it the testing in tracking the progress of the treatment and determining the effectiveness of the antibiotic used. A negative result does not always meant that the organism is not there, some people have reported having negative results that turned positive after the antibiotic treatment began, as the infection was driven out of the joints. Our resident experts should be along shortly to explain this to you better than I could, and hopefully will have a doctor in your area on their list of those knowledgeable in the AP. If you have reservations about the treatment, I'd suggest reading up a little on other treatments available, and compare the different risks. I did, and chose the antibiotic therapy. I can help you out with some references if you'd like. The sooner she gets on some treatment, and you begin to arrest the progression of the disease, the better. Regards, Liz G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 Congratulations to you and your family for doing your homework!!!! I don't have RA....I have scleroderma. So, the only advice I can throw your way is one of the concerns you raised in your post and that is the long term use of antibiotics. I have been on oral doxycycline 100 mg twice a day , Mon, Wed & Fri and sometimes I have used it daily ( for long periods when I traveled in the South Pacific and took it for my scleroderma, but ALSO was using it for malaria prevention...hence the daily dose.) I have been on doxy for three years now and have had NO side effects. My doctor regularly checks blood for liver problems etc. All my tests are good.!!!! I'm just saying this by way of reassuring you that the low doses as used in the protocol from the " Arthritis Breakthrough " are safe. Since your daughter hasn't yet compromised her immune system with the DMARDS etc, she stands a very good chance of getting her RA under control very easily. Hope that you will proceed with AP. I'm putting your family on my prayer list and will hold your daughter up to the Lord for His healing power. Love, Judy (deejay) ---------- > From: KRose145@... > Rheumaticonelist > Subject: rheumatic First time posting > Date: Monday, October 18, 1999 10:11 AM > > From: KRose145@... > > Hello to all, > I have been on this list and reading your posts for over a month now but > this is the first time I've decided to join in. My 13 year old daughter was > dx with rheumatoid arthritis this past Feb. We decided not to take the > rheumatologists advice (azulfadene) and instead she's been under the care of > a homeopathic MD and also takes many nutritional supplements like MSM, type > II collagen, boswellin, bromelain, ginger, vit.E, B5, and just recently > we've added naprasyn 250mg 2Xday, and although she sleeps well and tries to > maintain her regular life, as the months have passed we've watched it spread > to many joints and she is in no way in any kind of remission. So I've read > your posts and bios and been to the Road Back site and read the New Arthritis > Breakthrough and though I have some anxieties about this approach (like the > long term use of antibiotics, the IV's, the herx) it does seem to offer some > real hope. My questions are these: does anyone know a doctor experienced > with the AP in the metro New York/southern New England area? Does she have > to be tested for mycoplasma first and what if that's negative is the AP not > appropriate then? Also if anyone on the list has experience with AP and > children, I'd really appreciated hearing from you about how it's going. I've > been so impressed and touched by all of you, your knowledge, your willingness > to share and extend your support and compassion. Thanks in advance.. > Sincerely, > Kathy Rosenberg > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 [This message contained attachments] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 I can only second what Judy wrote. I don't have the same disease, but after 3 plus years of antibiotics I am only doing well. I have no side effects from the antibiotic. I have improved digestion, no major infections, and no yeast problems. a C. > From: " judy wiebe " <deejay@...> > > Congratulations to you and your family for doing your homework!!!! I don't > have RA....I have scleroderma. > So, the only advice I can throw your way is one of the concerns you raised > in your post and that is > the long term use of antibiotics. I have been on oral doxycycline 100 mg > twice a day , Mon, Wed & Fri and sometimes I have used it daily ( for long > periods when I traveled in the South Pacific and took it for my > scleroderma, but ALSO was using it for malaria prevention...hence the daily > dose.) I have been on doxy for three years now and have had NO side > effects. My doctor regularly checks blood for liver problems etc. All my > tests are good.!!!! I'm just saying this by way of reassuring you that the > low doses as used in the protocol from the " Arthritis Breakthrough " are > safe. Since your daughter hasn't yet compromised her immune system with > the DMARDS etc, she stands a very good chance of getting her RA under > control very easily. Hope that you will proceed with AP. I'm putting your > family on my prayer list and will hold your daughter up to the Lord for His > healing power. Love, Judy (deejay) > > ---------- > > From: KRose145@... > > Rheumaticonelist > > Subject: rheumatic First time posting > > Date: Monday, October 18, 1999 10:11 AM > > > > From: KRose145@... > > > > Hello to all, > > I have been on this list and reading your posts for over a month now > but > > this is the first time I've decided to join in. My 13 year old daughter > was > > dx with rheumatoid arthritis this past Feb. We decided not to take the > > rheumatologists advice (azulfadene) and instead she's been under the care > of > > a homeopathic MD and also takes many nutritional supplements like MSM, > type > > II collagen, boswellin, bromelain, ginger, vit.E, B5, and just recently > > we've added naprasyn 250mg 2Xday, and although she sleeps well and tries > to > > maintain her regular life, as the months have passed we've watched it > spread > > to many joints and she is in no way in any kind of remission. So I've > read > > your posts and bios and been to the Road Back site and read the New > Arthritis > > Breakthrough and though I have some anxieties about this approach (like > the > > long term use of antibiotics, the IV's, the herx) it does seem to offer > some > > real hope. My questions are these: does anyone know a doctor experienced > > > with the AP in the metro New York/southern New England area? Does she > have > > to be tested for mycoplasma first and what if that's negative is the AP > not > > appropriate then? Also if anyone on the list has experience with AP and > > children, I'd really appreciated hearing from you about how it's going. > I've > > been so impressed and touched by all of you, your knowledge, your > willingness > > to share and extend your support and compassion. Thanks in advance.. > > Sincerely, > > Kathy Rosenberg > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2002 Report Share Posted May 4, 2002 welcome phyliss, i hope you find support and alot of good info with this group. sounds like you have been dealing with lyme for quite a long time as have i and many others on this board. are you near saratoga springs? i went to college there many moons ago.... pj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Hi PJ, Yes i am one town over from Saratoga - I am on the border of Glens Falls. I shop in Saratoga or take road trips there when I am feeling up to it. thank you so much for the warm welcome. Hugs, Phyllie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2005 Report Share Posted December 14, 2005 Wow, you've hd a tough year! Hopefully, the CWD should reduce the chance of the C'toma growing back and allow them to see the growth in the office. I'm surprised that the Doctor didn't opt for this on surgery #2 ( but this is just my opinion, I'm no expert). Since it's been 2 weeks now since his CWD, maybe you'll start to see some improvement in his sleep and pain. My CWD took me a good 3 weeks to get over last year. I did however, still have some sharp shooting pain through the ear for about 6 months ( this is supposed to be normal). Keep us posted. > > My son is 6, he had his first surgery in April of this year, they > found what they described as a massive cholesteatoma. Which ate all > of the hearing bones, most of the mastoid and part of his ear canal. > > They went back in August for a second look to discover another > massive cholesteatoma this time had eaten a hole in his skull, they > repaired it with a cartlidge grafth. > > He under surgery again on December 1, which was suppose to be for > reconstruction of his ear canal and to implant a prostetic hearing > bone to everyones surprise especially the doctor. They found the > cholesteatoma had grown on the cartlidge grafth they had done during > his last surgery. The doctor decided he needed to do a Canal Wall > Down to try and get rid of any remaining diease, in the process of > completing this procedure they discoverd another cholesteatoma had > developed under his ear canal. The recovery from this last surgery > has been extremely difficult for my little boy, he stuggles with > pain daily....He has a very hard time sleeping. > > I am wondering what is next? He has been through so much this year. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2005 Report Share Posted December 15, 2005 wow, a hard row to sow for your little guy! just sending u good wishes for the future and that i hope his pain is manageable with meds or whatever. good luck! >From: " dej8mtj8 " <dej8mtj8@...> >Reply-cholesteatoma >cholesteatoma >Subject: First time posting >Date: Tue, 13 Dec 2005 16:03:44 -0000 > >My son is 6, he had his first surgery in April of this year, they >found what they described as a massive cholesteatoma. Which ate all >of the hearing bones, most of the mastoid and part of his ear canal. > >They went back in August for a second look to discover another >massive cholesteatoma this time had eaten a hole in his skull, they >repaired it with a cartlidge grafth. > >He under surgery again on December 1, which was suppose to be for >reconstruction of his ear canal and to implant a prostetic hearing >bone to everyones surprise especially the doctor. They found the >cholesteatoma had grown on the cartlidge grafth they had done during >his last surgery. The doctor decided he needed to do a Canal Wall >Down to try and get rid of any remaining diease, in the process of >completing this procedure they discoverd another cholesteatoma had >developed under his ear canal. The recovery from this last surgery >has been extremely difficult for my little boy, he stuggles with >pain daily....He has a very hard time sleeping. > >I am wondering what is next? He has been through so much this year. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2005 Report Share Posted December 18, 2005 "The doctor decided he needed to do a Canal Wall Down to try and get rid of any remaining diease, in the process of completing this procedure they discoverd another cholesteatoma had developed under his ear canal. The recovery from this last surgery has been extremely difficult for my little boy, he stuggles with pain daily....He has a very hard time sleeping." Hi I'm curious to know if the doctor suggested that the ctoma beneath the ear canal was a middle ear ctoma that had spread to that area or whether it was actually a form of "canal ctoma". Canal (aka external) ctoma is slightly different form of the disease usually with a different aetiology. One of it's main features is that it buries itself inside the bone which makes it difficult to treat since every time it's removed it tends to spring back almost immediately. It tends also to spread into the mastoid and middle ear just like regular ctoma. If it were this disease then surgery may never fully succeed, and it may need to be maintained on a permanent basis. Unfortunately it is a rare form of ctoma and therefore many accomplished otologists may not know a great deal about it. Let me know if this may be what you're dealing with, I can possibly give you some more information. I hope your son is managing to recover a little better. Phil No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.371 / Virus Database: 267.14.1/206 - Release Date: 16/12/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 In a message dated 4/28/2006 10:52:46 A.M. Eastern Standard Time, julieaw66@... writes: He picks at scabs when he gets anxious and harrasses his 4 yr old brother. He tries to get me to chase him and says he wants to get in trouble. He'll go on the computer when he's not supposed to and say he's going to run away. That paragraph sums up my son. They could be twins! Sheree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 In a message dated 4/28/2006 10:52:46 A.M. Eastern Standard Time, julieaw66@... writes: He picks at scabs when he gets anxious and harrasses his 4 yr old brother. He tries to get me to chase him and says he wants to get in trouble. He'll go on the computer when he's not supposed to and say he's going to run away. That paragraph sums up my son. They could be twins! Sheree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 In a message dated 4/28/2006 10:52:53 A.M. Eastern Standard Time, julieaw66@... writes: The Psy had us up Zoloft to 100 but ds had alot of trouble settling down at night and we're back to 50. May try to go up more slowly. Welcome to the group. Our psychiatrist says to go very slowly with upping medication dosage. My daughter has only been upped 10mg each time we increased it & there is generally 6-8 weeks between appts. LT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 > He picks at scabs when he gets anxious and > harrasses his 4 yr old brother. He tries to get me to chase him and > says he wants to get in trouble. He'll go on the computer when he's > not supposed to and say he's going to run away. That paragraph sums up my son. They could be twins! Sheree, How do you handle it when your son acts this way. I get so frustrated. Last night when it happened, we went for a walk, which helped, but when we got back it continued. I literally dragged him upstairs where did settle down after I read to him in bed for a while and then he fell asleep. But I was tired and confused as to what is going on with him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 > He picks at scabs when he gets anxious and > harrasses his 4 yr old brother. He tries to get me to chase him and > says he wants to get in trouble. He'll go on the computer when he's > not supposed to and say he's going to run away. That paragraph sums up my son. They could be twins! Sheree, How do you handle it when your son acts this way. I get so frustrated. Last night when it happened, we went for a walk, which helped, but when we got back it continued. I literally dragged him upstairs where did settle down after I read to him in bed for a while and then he fell asleep. But I was tired and confused as to what is going on with him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 Hi , wow, could I relate to some of the things you mentioned! I have a son, 17, whose OCD appeared around age 11.5. Where you wrote: ...rewriting, & doubting.... Then last year he started having to touch things and walk through rooms or get into bed in a certain way. He would also look up over his shoulder frequently. Bedtime was the worst because if he didn't get into bed right, he would be up most of the night redoing it. MY son had some rewriting, a LOT of touching (even getting *stuck* to what he was touching) and bedtime was the same way. Boy did I used to vent here about lack of sleep due to being up with him while he tried to get in/on bed the " right " way or til he got some *right* feeling, etc. And the part about looking over his shoulder...that sounds familiar. With my son being 17 now, I actually forget some of the things we went through until someone mentions it. His OC's also changed during that first year, but many stuck around! I'm with you about the doctor. Regarding dad, I don't understand that either unless he feels dad is making your son more anxious in some way, which would worsen his OCD? Also with any new behaviors that occur during any med adjustment, I'd tend to put it down to the medication. Even picking scabs. I'd go up slowly too with the medication since you had to lower it. Well, just had to comment on the similarities and I think your gut feelings on this are on the right path! > > Hi Everyone, > Although this is my first post, I joined several months ago and read > the posts almost every day. This has helped remind me what I'm > dealing with and that I'm not alone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 , I would LOVE to have an answer for you but I am still trying to figure it out myself. LOL My son TRIES our patience. We usually end up switching medications and then sit back and pray that it helps. For us though, Hayden gets worse for a while then around the 6th week or so we can tell if it will help. Right now we are on a new medication. I can already see improvements in many things but the behavior still isn't where I would like it to be. Where do you live and what age is your child? I bet they would get along GREAT! Sheree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 , I would LOVE to have an answer for you but I am still trying to figure it out myself. LOL My son TRIES our patience. We usually end up switching medications and then sit back and pray that it helps. For us though, Hayden gets worse for a while then around the 6th week or so we can tell if it will help. Right now we are on a new medication. I can already see improvements in many things but the behavior still isn't where I would like it to be. Where do you live and what age is your child? I bet they would get along GREAT! Sheree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 , My son's doctor added risperdal to his medication to help him sleep at night. Sheree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 , My son's doctor added risperdal to his medication to help him sleep at night. Sheree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 Hi , Don't feel alone. My 9yr old dd does this also. She has scars all over herself from picking scabs, and she also seems to " enjoy " getting into trouble. If I put her in her room, than let her out,she'll scream for me to put her back in and to lock the door this time. I also have a 4yr old showing some symptoms of ocd , and an anxious 11 yr old. I have ocd myself, so I guess I should have known this would happen. Anyway, I just joined this group myself and have gotten so much support from all these wonderful people. I guess we're all in this together! hugs Judy julieaw66 <julieaw66@...> wrote: He picks at scabs when he gets anxious and harrasses his 4 yr old brother. He tries to get me to chase him and says he wants to get in trouble. He'll go on the computer when he's not supposed to and say he's going to run away. The 4 year old is showing signs of OCD and I have an 8 year old son also who seems anxiety prone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 Hi , Don't feel alone. My 9yr old dd does this also. She has scars all over herself from picking scabs, and she also seems to " enjoy " getting into trouble. If I put her in her room, than let her out,she'll scream for me to put her back in and to lock the door this time. I also have a 4yr old showing some symptoms of ocd , and an anxious 11 yr old. I have ocd myself, so I guess I should have known this would happen. Anyway, I just joined this group myself and have gotten so much support from all these wonderful people. I guess we're all in this together! hugs Judy julieaw66 <julieaw66@...> wrote: He picks at scabs when he gets anxious and harrasses his 4 yr old brother. He tries to get me to chase him and says he wants to get in trouble. He'll go on the computer when he's not supposed to and say he's going to run away. The 4 year old is showing signs of OCD and I have an 8 year old son also who seems anxiety prone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 Hi ~ My 8 yr old son also had trouble getting to sleep with the Zoloft (he's on 50 mg) so his pdoc suggested splitting the tablet in half and giving him half after breakfast and half after dinner to spread it out a little more evenly. That really helped with sleeping and also with the acting out (he seemed to get " naughty " about an hour after we gave him his pill). He also seems to sometimes enjoy getting in trouble. I think maybe it's his way of fighting back the OCD that usually tells him bad things will happen if he does anything " wrong " . Maybe makes him feel a little more " normal " ? Or maybe most 8 yr old boys get this devilish streak and I just don't know it because I don't have any older children to compare to. He's also a HUGE nail/cuticle picker. Drives me insane!! I HATE that noise, not to mention how awful and painful his poor fingers look! I think he sits and watches for his cuticles or nails to grow a milimeter so he can pick it right away le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 Sheree We live in Alpharetta in North Fulton Co., GA. My son in 11 and in 5th grade. It would be great to find someone he could really relate to, although I'm amazed at the number of friends he has and a couple of the closer ones know about his OCD. > > , > > I would LOVE to have an answer for you but I am still trying to figure it > out myself. LOL My son TRIES our patience. We usually end up switching > medications and then sit back and pray that it helps. For us though, Hayden gets > worse for a while then around the 6th week or so we can tell if it will help. > Right now we are on a new medication. I can already see improvements in many > things but the behavior still isn't where I would like it to be. Where do you > live and what age is your child? I bet they would get along GREAT! > > Sheree > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 Hi , We live in Buford, GA. I don't think we are that far away. I would love to meet with you sometime. Sheree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Ali, I'm sure then you read my post this morning regarding my being an " off and on " BFLer since January too... hehe :-P I am starting today to kick it in gear and join my own challenge :-) Let's do this girl!!!!!!! yah... time to KICK BUTT!!!!!! Alison Bonner wrote: Hello, I have been reading this list off and on since January. I've also been trying to stick to the BFL plan off and on since January too. It's time to stop being a weekday BFL-er and start being full-time! My name is Ali and I'm 39. That number forty is coming up in November and I want to be at my " happy " size by then. I've always enjoyed lifting weights and I like the BFL way of half pyramiding your weights. I've actually noticed bigger biceps and tricep definition even though I've been so higgly-wiggly with my workout schedule. So hello to everyone and thank you for all the great information that you've shared. This list is a treasure trove of truly great info! Ali --------------------------------- Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1 & cent;/min. Quote Link to comment Share on other sites More sharing options...
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