Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 le, I hope things improve quickly for Issabella. It often takes a while for the medication to kick in and do the job it is intended to do. Also it often takes trying more then one medication before they find one that works. Unfortunatly it seems that the doctors often want to wait up to six weeks or longer before they determine that one med is not working. The fact that you have to change doctors after just getting the diagnosis may not help much either. Be sure to take all your records with you and try to schedule an appointment now for when you will get moved. Don't wait til you get moved and settled to try and call to fnd a rheumy. I don't know how it works in the military but assume that you have to use only military doctors unless they do not offer what you need. So I will pray that the military will have a good one for you in Georgia. If not, then you need to talk to Robbin on this list and she will probably have more information for you then you really want. I also have no clue how close Augusta is to Atlanta. I dont have a map handy to look at and have only been to Georgia once. But Robbin is in the Atlanta area and she is always very eager to help anyone.? I am sure you will see a post from her since you mentioned that you are moving to Georgia. You will have to be patient as you travel this road with JRA. But you will also have to be very determined and stubborn to get what you need for your daughter.? Good luck. Veri & Jaye 14 poly New Here Hi everyone! My name is le and I am a mom to a 22 month old daughter. Her name is Isabella Leilani and she was diagnosed with JRA in July. It sure has been a frustrating road coming as when we first wanted to know what was wrong with Isabellas walking and bent stiff leg. The doctors at Tripler Army Medical center did blood work,ultrasounds and xrays only to say there was nothing wrong with her. I know this wasnt so .... So I made the decision to move home to San with ISabella to take her to the Army hospitals here. She was diagnosed with JRA. Her diagnoses is still some what new and all I know is that she has it. I dont know any information really and the doctors dont seem in a rush to see her more often. Isabella is going to physical therapy twice a week. In the beginning it was going great and we have seen a 50% improvement from the beginning. Unfortunatly now that it is geting cold she is not compliant at physical therapy which is frustrating to hear her screaming bloody murder due to the pain. She does take naproxin twice a day but it doesnt seem to be helping with the pain. We had an appt on the 30th of this month but I called today to see if we can get in sooner and we can on thursday. I hope to find out more information through this group and my doctor. This will be the second and last time we will visit with this rhuematologist as we are pcsing to Augusta Georgia at the end of November. I have rambled enough! I am a full time mom, student, wife and best friend! Life is hectic! *laughs*.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Hi , I have a son, 19 yrs, who was diagnosed in 8th grade with HFA/Aspergers. He is a twin, not identical. The twin is " typical. " Your note reminded me of my Aspie some. Now he did, with twin, begin to speak around average time but they never developed the speech well. They were " pointers " , preferring to point to things, etc. I had an older child, almost 4 when they were born, who was " typical " too and he had attended childcare from 8 weeks old and progressed " normally. " With the twins, my mom kept them while I worked (I left their dad when they were 2 months old). Anyway, my Aspie () always seemed to be a couple months behind his twin in developing skills like sitting up, crawling, beginning to climb, etc. As he got older, he did seem to have motor skill problems. Unlike you, I didn't know about things like early intervention services, etc. To shorten this a bit, LOL, neither twin seemed to want to begin to progress in talking until they were around 3 yrs. And then their " articulation " wasn't good, but I had been that way also and had had speech therapy, so figured it was just " in the family. " Really, no one could understand either of them, I called their speech " jibber-jabber. " My mom said my dad apparently didn't speak until around age 3 either. So - elementary school. really behind in motor skills, the fine and gross ones. Very smart kid though, did well at all the learning. Had done well at home with learning too, just seemed behind in other ways. I never could " put my finger on it " but he just seemed " off " in some ways. Later on as I learned of Aspergers and the more " mild " type autism, I used to think occasionally that had some of the " traits " but probably not enough for a diagnosis. It seemed to stand out more in middle school to me, all the daily- living type skills he still seemed to lag behind in although he excelled at school. (not socially though, just in grades/learning) This could get really long, LOL, he's 19, but fast-forward: he began to gain much more ground in high school, even socially, although he never had friends to hang out with outside school. Now he's in his 2nd year of college, still plans a career in medical research (has almost always said he wanted to be a scientist). He is treasurer of both the Science Club and the Student Government Association at his community college and plans to transfer to a university next year. There are still " problems " in areas, like I do worry about his getting his driver's license, I think he would do okay in our small type city, but never a larger one and I don't plan for him to drive back/forth to university (will try for his license soon). He doesn't seem to have initiative to do the everyday needed tasks (e.g., cleaning, laundry...) so I wonder about what will he do at college?? And I wonder about initiative/ability to be on his own later, after college. So there are still a few things I worry about but overall he is doing fine but I don't like to underestimate him, he has surprised me at times when I've tended to. Know this got a little long but still so much left unsaid. I would work on his motor skills, there are fun ways to do this too. And work on self-help skills. But don't push too hard, frustration will just slow them down I think. It was 3rd grade...4th? before he learned to tie his shoes, learned to cut better with scissors, 5th grade riding a bike (didn't do that much at all, but finally learned). Welcome to the group! > > Hi all, > > I thought I'd introduce myself. My name is and I have 2 > little ones with one scheduled to arrive via scheduled c-section on Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Hi le,and welcome to the group. My name is Lani, and my daughter is 2 and has ANA+ Poly JRA. I just wanted to say hello, and hang in there sweetie. It took so long for the doctors to get my daughters disease under control, but she is walking now, and hasn't had a flare or contracture in 4 months. Stick to your guns and instincts as you have been. I pray they find the right combo for your little one. I know how heart breaking it is to see them suffer and not be able to move. started on Methotrexate in addition to the Naproxen a few months back, and it has made ALL the difference. I was so scarred to put her on such serious meds, and she wasn't even two yet. I know its all scarry, but the meds really really help. Best wishes to you and yours, Lani > > Hi everyone! My name is le and I am a mom to a 22 month old > daughter. Her name is Isabella Leilani and she was diagnosed with JRA > in July. It sure has been a frustrating road coming as when we first > wanted to know what was wrong with Isabellas walking and bent stiff > leg. The doctors at Tripler Army Medical center did blood > work,ultrasounds and xrays only to say there was nothing wrong with > her. I know this wasnt so .... So I made the decision to move home to > San with ISabella to take her to the Army hospitals here. She > was diagnosed with JRA. Her diagnoses is still some what new and all > I know is that she has it. I dont know any information really and the > doctors dont seem in a rush to see her more often. Isabella is going > to physical therapy twice a week. In the beginning it was going great > and we have seen a 50% improvement from the beginning. Unfortunatly > now that it is geting cold she is not compliant at physical therapy > which is frustrating to hear her screaming bloody murder due to the > pain. > > She does take naproxin twice a day but it doesnt seem to be helping > with the pain. We had an appt on the 30th of this month but I called > today to see if we can get in sooner and we can on thursday. I hope > to find out more information through this group and my doctor. This > will be the second and last time we will visit with this > rhuematologist as we are pcsing to Augusta Georgia at the end of > November. I have rambled enough! > > I am a full time mom, student, wife and best friend! Life is hectic! > *laughs*.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2008 Report Share Posted November 16, 2008 Welcome to the group, ! Feel free to jump in anywhere! RoxannaYou're UniqueJust like everyone else... ( ) New here Hi all,I thought I'd introduce myself. My name is and I have 2 little ones with one scheduled to arrive via scheduled c-section on November 24th. My oldest is 4 and his name is J.T., he has just recently been officially diagnosed on the spectrum but very high functioning. The neurologist told me that when he gets older it will be considered Aspergers. My daughter is 3 and her name is and she is a "typical" child. Most of the time people think they are twins (they are 14 months apart) but notice that J.T. is "different".I've always known that something was off when he didn't hit milestones as quickly as most other babies his age but brushed it off when everyone else told me that it was "normal" for first born boys to be a little behind. At 15 months my pediatrician recommended we go for speech therapy since he had no words, not even "Mama" or "Dadda". He also recommended we get and MRI due to his traumatic birth. The MRI came back fine and we went for private therapy to help his speech. He did not like this at all and cried and resisted therapy. Well I continued for several more weeks and when I saw that the therapist really got nowhere with him I decided to take him out. Right before he turned 2 we called Early Intervention. They came out and evaluated him and he started to receive speech, OT, and DT. We soon dropped the DT since the therapist was horrible and didn't do her job and the wait for another DT was so long. We decided to pick up more speech and OT time. I wish I could say he made great gains during this year but I didn't really notice all that much.Right before J.T. turned 3 he was evaluated for Early Childhood and qualified (that was no surprise to us). He still had no words but within the first 3 weeks of summer school (he's a late May birthday) he said "Mama" for the first time! I was thrilled. I wish I could be a fly on the wall to see what they do to get all of this out of him but I know I can't and it's probably best for me to just enjoy him coming home with all this new language and development everyday.I had been asking since he was about 1 if the pediatrician felt he could be on the spectrum. Of course I heard that he didn't see it so we'd just keep an eye on it. I should have demanded more but being a first time mom I didn't. I also asked his therapists if they saw any signs and they told me no as well. Being that I am a teacher I know that legally they can't tell you yes but they can encourage you to seek out professional opinions if they think there could be something going on. Well when it comes down to it, I asked every person that worked with J.T. whether they saw it or not. His EC teacher and therapists said that sometimes they saw it but most days they didn't. Finally, when I switched pediatricians she finally listened to my concerns and referred me to a pediatric neurologist.When we went to visit I was shocked at how fast he came to the diagnosis. Again, it wasn't a surprise but I thought they would have to do a lot of testing to get to that result. I am very pleased to have a diagnosis after feeling that there was something more than just delays but I'm still looking for more help. I'm looking for things I can do to help him get as far in life as possible. I'm concerned for next school year when he's supposed to go into kindergarten (of which I don't think he'll be ready) what's really going to happen from there. I'm looking for other things I can do in general.Well, sorry this was so long. I just thought I'd share a little of my story. I'm looking forward to getting to know you all and hearing how you are moving forward with all of this. I appreciate you taking the time to read my story. No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.175 / Virus Database: 270.8.2/1739 - Release Date: 10/22/2008 7:23 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2008 Report Share Posted November 19, 2008 What kind of band did you get? With out seing what you are talking about I cannot say... but if you EVER have a question call you ortho! It may be normal shifting of the bones or the band may need ot be adjusted. Jen and Luli - almost 3 years old Left tort - Right Plagio - Hanger Band Grad - CA http://www.babiesonline.com/babies/j/jens5th/ New Here Hi, My 6 month old son just got his helmet on Monday. The adjustment has gone well for the most part. My question is, it looks like a couple of ridges has come up on the back of his head, is this normal? Thanks in advance. Traveling over the river or through the woods this holiday season? Get the MapQuest Toolbar. Directions, Traffic, Gas Prices More! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 Hi and welcome!!! My first guess would be that it's his cranial sutures - my son's sutures became really noticeable after a little while in the band. He has a DOC Band, and he also get a ridge on the top of his head where the piece in the front comes up hold the band steady - it's pretty obviously in the shape of the band and it comes and goes - it's just some swelling of the skin from what his therapist told me. Nothing serious and totally normal. Hope this helps! Good luck to you! Jess Mom to Luke - 5.5 months old - 6 wks in DOC Band Mom to JT - 2 years old - beautiful naturally round head! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2008 Report Share Posted November 22, 2008 Hi-- It is hard to say without seeing it, but I do see somethins similar with Merrick. There seems to be a ridge on the right side. I pointed it out at his last CT appt. and was told that it was very normal to have that bump and then flatness especially because it is where his helmet comes together. She said its similar to when we wear our wedding ring..how when it comes off there is a bump and the flatness. She said that it will for sure go away after he is out of the band. She said that it may take a week or it may take a month but that they have never had anyone come back and say that it never went away. H. > > What kind of band did you get? > With out seing what you are talking about I cannot say... but if you EVER have a question call you ortho! > It may be normal shifting of the bones or the band may need ot be adjusted. > > > ?Jen and Luli - almost 3 years old > Left tort - Right Plagio - Hanger Band Grad - CA > http://www.babiesonline.com/babies/j/jens5th/ > > > New Here > > > > > > > Hi, > > My 6 month old son just got his helmet on Monday. The adjustment > has gone well for the most part. My question is, it looks like a couple > of ridges has come up on the back of his head, is this normal? Thanks > in advance. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2008 Report Share Posted November 22, 2008 My son had the same ridge, between the velcro closure of his band, and it has gone away since graduating. I think it took about a month and a half or so. Jake-2 (DOCBand Grad 9/19/08) Jordan-4.5 > > > > What kind of band did you get? > > With out seing what you are talking about I cannot say... but if > you EVER have a question call you ortho! > > It may be normal shifting of the bones or the band may need ot be > adjusted. > > > > > > ?Jen and Luli - almost 3 years old > > Left tort - Right Plagio - Hanger Band Grad - CA > > http://www.babiesonline.com/babies/j/jens5th/ > > > > > > New Here > > > > > > > > > > > > > > Hi, > > > > My 6 month old son just got his helmet on Monday. The adjustment > > has gone well for the most part. My question is, it looks like a > couple > > of ridges has come up on the back of his head, is this normal? > Thanks > > in advance. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 Thanks everyone. We are going to the Dr tomorrow for an adjustment, so I will be able to ask about that too. Thanks again!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2008 Report Share Posted November 27, 2008 Welcome , I'm new here too. My daughter Jemma is also 13. She has some type of arthritis affecting her fingers, probably psoriatic. She has psoriasis as well. Just this week I found out she has hypothyroidism and Sjogren's. I think all these autoimmune diseases often come together. It is so hard when it happens to your child. I will keep you in my thoughts and prayers today. Ruth in TN > > Hi all my name is and I live in Ontario Canada > > My daughter Meghan is heading to the Dr today. Her eyes are so sore she > has hives ( she has excema a psorisis) her joints are killing her. > Especially where has had a previous injury. Her knee and wrist though > she says she is very sore. She missed school Monday. > > My friend and nurse talked to another nurse and said get her into the > Dr. I have a list of blood tests that should be done. > > Meghan is 13 and she has Retinitis Pigmentosa a degenerative eye > disease. I so hope she does not have a type of Arthritis but it sure > makes sense if she does. > > SIGH why does it rain and pour on one child all the time. > > Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2008 Report Share Posted November 28, 2008 Hi, . Welcome to the group. I am sorry to hear of your daughter's struggles. I understand totally about it raining on one child. My son (like many here) has multiple diagnoses- allergies, asthma, and the arthritis. There is a lot of info here. Please update us on your daughter when you can, Michele ( 21, spondy) ________________________________ From: [mailto: ] On Behalf Of Sent: Wednesday, November 26, 2008 9:56 AM Subject: New Here Hi all my name is and I live in Ontario Canada My daughter Meghan is heading to the Dr today. Her eyes are so sore she has hives ( she has excema a psorisis) her joints are killing her. Especially where has had a previous injury. Her knee and wrist though she says she is very sore. She missed school Monday. My friend and nurse talked to another nurse and said get her into the Dr. I have a list of blood tests that should be done. Meghan is 13 and she has Retinitis Pigmentosa a degenerative eye disease. I so hope she does not have a type of Arthritis but it sure makes sense if she does. SIGH why does it rain and pour on one child all the time. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2008 Report Share Posted November 28, 2008 So sorry to hear about Meghan. Hang in there. My name is . I have the website www.kidswitharthritis.com. Take a look maybe some good information for you. Can you please e-mail list of blood tests that should be done. I want to talk more about blood tests on my site plus offer something in the future to familys that do not have insurance. My e-mail is coachrt@... Thank you ________________________________ From: " Tepper, Michele " <MTepper@...> Sent: Friday, November 28, 2008 9:43:54 AM Subject: RE: New Here Hi, . Welcome to the group. I am sorry to hear of your daughter's struggles. I understand totally about it raining on one child. My son (like many here) has multiple diagnoses- allergies, asthma, and the arthritis. There is a lot of info here. Please update us on your daughter when you can, Michele ( 21, spondy) ____________ _________ _________ __ From: @group s.com [mailto: @group s.com] On Behalf Of Sent: Wednesday, November 26, 2008 9:56 AM @group s.com Subject: New Here Hi all my name is and I live in Ontario Canada My daughter Meghan is heading to the Dr today. Her eyes are so sore she has hives ( she has excema a psorisis) her joints are killing her. Especially where has had a previous injury. Her knee and wrist though she says she is very sore. She missed school Monday. My friend and nurse talked to another nurse and said get her into the Dr. I have a list of blood tests that should be done. Meghan is 13 and she has Retinitis Pigmentosa a degenerative eye disease. I so hope she does not have a type of Arthritis but it sure makes sense if she does. SIGH why does it rain and pour on one child all the time. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 , Welcome! I recall that there is someone out there who treated their Polychondritis with antibiotics. I think if you google Dr. Trentham, who is a specialist in this treatment, eventually you will come across the account of a patient with RP who treated herself with antibiotics and called Dr. Trentham to tell him of her success. I remember reading it in the past. Hope this helps. I have had enormous success with the antibiotic treatment for my own illness after coming across this information online- and my doctors all told me there was no hope of recovery. I am such a believer! I was spared all of the immunosuppressant drugs and only use this. Wish you the best of the luck! Feel free to keep asking questions if you decide to try this treatment. This group literally saved my life. Emma On Fri, Dec 19, 2008 at 12:18 PM, rbblk <spartacus1_1@...> wrote: > Hi all, > > My name is and I was diagnosed with a rare autoimmune disease > called Relapsing Polychondritis (RP) about one year ago. I'm currently > on 15mg/week of Methotraxate and recently stumbled upon information > linking autoimmune disease to intra-cell bacteria. This has given me a > new ray of hope as I'm not crazy about taking Metho. > > I have so many question along with some healthy skepticism, I'm not > sure where to start. Is there anyone here with RP and has AP helped you? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 Hi , There are so many people on this site and on the Roadback.org site that will testify that they got better with antibiotics. Those toxic drugs will kill you. I no longer believe people who have any of these so-called autoimmune diseases should be seeing Rheumatologists. I no longer call these diseases autoimmune because they should be called (Infectious diseases) instead. I changed from a Rheumy to an " Infectious Disease Doctor " and he understands why I chose antibiotics. I don't have to teach him anything or argue about why I won't take steroids and the like. This is a great weight off my shoulders. He ordered all the right labs right off without question. I am positive for micoplasma pneumonae and for Ebstein Barr Virus. So, I fight it all of with Minocin, Azythromycin, Clindamycin and Benicar. It's a long trip, but I have lots of patience and now with this doc, I can relax knowing my antibiotics can be ordered easily without having to get special permission from any insurance company. If any of you are not only fighting your disease, but also fighting your Rheumatologist, find an " Infectious Disease Doctor " . I didn't even know there were specialists in this category. Ironically, it was a Rheumatologist who told me he believed me, but his hands were tied and he was unable to treat me. It was he who steered me to the " Infectious Disease Doctor " and on the way out, he said, " I hope you prove me wrong " and get well. I feel sorry for Rheumies who must keep on treating with steroids because this is what they were taught in school and they must follow protocol. They are at least 50-60 years behind. Antibiotic Protocol has gotten a bad rap from them. I think they fight it because if they can't treat with Steroids, they will be out of a job. And the Pharmaceutical companies who make Enbrel, Remicade, Prednisone, Methotrexate and the likes would go out of business. It's a shame that our health care system is in it for the money instead of for the health of the nation. No wonder, we are in the mess we are in. Let's hope this New Year, we will have the breakthrough we have been looking for. There is no doubt in my mind that antibiotics is the only way to go. Happy Holidays to all, Dolores & Mike > Hi all, > > My name is and I was diagnosed with a rare autoimmune disease > called Relapsing Polychondritis (RP) about one year ago. I'm currently > on 15mg/week of Methotraxate and recently stumbled upon information > linking autoimmune disease to intra-cell bacteria. This has given me a > new ray of hope as I'm not crazy about taking Metho. > > I have so many question along with some healthy skepticism, I'm not > sure where to start. Is there anyone here with RP and has AP helped you? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 Dolores, To look for an Infectious Disease specialist instead of a Rheumatologist is a great idea. Overall, Rheumatologists have not only not been helpful to us, but even detrimental. I just have been dealing with a naturopath and family doc who are prescribing abx for me, but I have " just " RA, kept well in check with AP, whereas many people on this list have complicated illnesses that need more medical care. Good suggestion! Take care, Ute Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 Mike, Delores, and Emma, Thanks for all your thoughts. I've ordered the " New Arthritis Breakthrough " which will hopefully answer some more of my questions. Is the theory behind all this that ALL autoimmune diseases are really just infectious, OR that some infectious diseases mimic autoimmune disease? For instance, I know that Lyme disease it the great mimicker. If it is the latter, than it seems like having a full panel of testing would be very important, otherwise AP could be useless. If the former, than this raised my skepticism a little more because it wouldn't explain why a stem cell transplant which effectively replaces one's immune system will put a patient into remission, or why T-cell vaccines work. Anyway, maybe it's not important and if AP works even if the exact mechanism is not known it really doesn't matter. I'm so exhausted with study in the past year. One thing I've learned is that you have to be your own advocate...and I realize that. But, quite frankly from what I've read so far it seems like AP is much more complicated—if you want to do it right—than traditional treatments because there are a whole spectrum of diseases that one needs to be tested for and then treated with the appropriately ABXs and dosages accordingly. Are there Doctors out there that I can trust to leave this all to them without having to spoon feed them and double check everything? I've heard some good things about Dr. Franco in CA. Am I making this out to be more complicated than it is, or do you all just get on Minocin without any specific infectious disease and microplasma testing? Thanks for your help and patience with me. > > > Hi all, > > > > My name is and I was diagnosed with a rare autoimmune disease > > called Relapsing Polychondritis (RP) about one year ago. I'm currently > > on 15mg/week of Methotraxate and recently stumbled upon information > > linking autoimmune disease to intra-cell bacteria. This has given me a > > new ray of hope as I'm not crazy about taking Metho. > > > > I have so many question along with some healthy skepticism, I'm not > > sure where to start. Is there anyone here with RP and has AP helped you? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 Hi , not everyone is on Minocyn. I am taking Biaxin do to the problem I had with the sinus, I am now on both Minocyn and Biaxin, alternating days, per my doctors recommendation. I have a doctor here in Texas, but as Dolores already said, you may want to find an infectious disease doctor and see if he could help you. Most of us are open to help where we can get it. Stay well, Eva From: rbblk <spartacus1_1@...> Subject: rheumatic Re: New Here rheumatic Date: Saturday, December 20, 2008, 1:58 PM Mike, Delores, and Emma, Thanks for all your thoughts. I've ordered the " New Arthritis Breakthrough " which will hopefully answer some more of my questions. Is the theory behind all this that ALL autoimmune diseases are really just infectious, OR that some infectious diseases mimic autoimmune disease? For instance, I know that Lyme disease it the great mimicker. If it is the latter, than it seems like having a full panel of testing would be very important, otherwise AP could be useless. If the former, than this raised my skepticism a little more because it wouldn't explain why a stem cell transplant which effectively replaces one's immune system will put a patient into remission, or why T-cell vaccines work. Anyway, maybe it's not important and if AP works even if the exact mechanism is not known it really doesn't matter. I'm so exhausted with study in the past year. One thing I've learned is that you have to be your own advocate...and I realize that. But, quite frankly from what I've read so far it seems like AP is much more complicated—if you want to do it right—than traditional treatments because there are a whole spectrum of diseases that one needs to be tested for and then treated with the appropriately ABXs and dosages accordingly. Are there Doctors out there that I can trust to leave this all to them without having to spoon feed them and double check everything? I've heard some good things about Dr. Franco in CA. Am I making this out to be more complicated than it is, or do you all just get on Minocin without any specific infectious disease and microplasma testing? Thanks for your help and patience with me. > > > Hi all, > > > > My name is and I was diagnosed with a rare autoimmune disease > > called Relapsing Polychondritis (RP) about one year ago. I'm currently > > on 15mg/week of Methotraxate and recently stumbled upon information > > linking autoimmune disease to intra-cell bacteria. This has given me a > > new ray of hope as I'm not crazy about taking Metho. > > > > I have so many question along with some healthy skepticism, I'm not > > sure where to start. Is there anyone here with RP and has AP helped you? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 Emma, BTW, I think the person you're thinking of is Connie H. I had emailed her but it bounced Hope she is OK. > > > > > Hi all, > > > > > > My name is and I was diagnosed with a rare autoimmune > disease > > > called Relapsing Polychondritis (RP) about one year ago. I'm > currently > > > on 15mg/week of Methotraxate and recently stumbled upon > information > > > linking autoimmune disease to intra-cell bacteria. This has given > me a > > > new ray of hope as I'm not crazy about taking Metho. > > > > > > I have so many question along with some healthy skepticism, I'm > not > > > sure where to start. Is there anyone here with RP and has AP > helped you? > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 I need to disagree. Maybe I am just lucky, but I go to a top rheumatologist in NYC, and he tried me on the antibiotics. When he saw how amazing my reaction to them was, he kept me on them. When the doxycycline stopped working for me, I had no problems having him prescribe minocycline. At first he had tried me on the usual rheumie drugs, but he was definitely open to other things, when they didn't work for me. I have now started the l-lysine treatment that I read about on this website (thanks Soheila). I do really well now with my reactive arthritis, except for when the rain or snow comes in, and then I'm in so much more pain, and I am also so much more tired. I'm hoping that the l-lysine will take care of that. I had experience with a infectious disease doctor that my rheumie sent me to at the beginning of this illness, but he wanted to have nothing to do with me. This wasn't my first bad experience with I.D.'s. I don't have much respect for them. Mona rheumatic Re: New Here Emma, BTW, I think the person you're thinking of is Connie H. I had emailed her but it bounced Hope she is OK. > > > > > Hi all, > > > > > > My name is and I was diagnosed with a rare autoimmune > disease > > > called Relapsing Polychondritis (RP) about one year ago. I'm > currently > > > on 15mg/week of Methotraxate and recently stumbled upon > information > > > linking autoimmune disease to intra-cell bacteria. This has given > me a > > > new ray of hope as I'm not crazy about taking Metho. > > > > > > I have so many question along with some healthy skepticism, I'm > not > > > sure where to start. Is there anyone here with RP and has AP > helped you? > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 Hi Mona, Yes, you are very lucky that you have found a Rheumy that will work with you. My experience has been that, except for a few handful of Rheumy's around the country, most want to treat with steroids and such toxic meds. I have met so many blind sided ones that I do welcome the Infectious medical doctor who is not giving me a difficult time. I also went to that same doc in NY, only he treated me at his private office in NJ because he said he couldn't treat me with antibiotics at the NY Hospital for Special Surgery where he works with some patients who because of Insurance must see him in NY on Wednesdays only. The doctors that run the Rheumatology dept at that hospital did give me a very hard time at all the meetings I went to. I thought I was going to have to fight the world when I had to move twice this past year. When I found an agreeable doctor, I was and am so very thankful. If you notice, I asked at the beginning of my post that if people were tired of fighting with their Rheumy for A/P, they should try to get their antibiotics thru an infectious disease doctor. It is just so much easier. But if they have a compliant doctor, well they have it made. You are one of the lucky ones. I was too, when I first went to Dr. Trentham in Boston who started me on the Minocin. I did extrememly well. But 18 months later, when I decided to go on MP is when I ran into problems trying to find a compliant Rheumy who would do MP. Dr. Whittman said he would manage me on the MP, but on the first visit, he changed all the dosages and meds so that it didn't even resemble the protocol I wanted to try. I never went back and instead found an internist, who knew nothing about MP, but was willing to try. My other doctors (not rheumy's also begged me not to do MP. But I was determined and have been hanging by my coattails searching for compliant docs. Now, I am just elated with my new doc. I don't advise anyone to change docs unless they are struggling to keep getting their antibiotics and be able to do the protocol of their choice. I don't believe that a doc is there to cure me. I believe a doc is there as a partner to help me cure myself.  As to the questions raised whether these diseases are of Infectious or autoimmune origin. Well, that is the answer that will come in time with more research. And it will take time because there are so many different diseases that mimic each other. That is why I believe there is such controversy regarding treatment. And I don't believe that enough research has been done to give a positive answer one way or the other. And to add complications, not all people respond equally to the same protocol even with the same disease or similar ones. There is no proven theory yet. We are all experimenting. As for me. I am sold on antibiotics. They have saved my life so far. I am happy with my progress and I am happy with my doctor. And finally, my point was, if you are not happy, keep on searching. If you believe in some cure fiercely, do not let anyone deter you from trying out the protocol. Experiment! Only you know how you feel. The best to all of you, Dolores & Mike From: Mona Goldstein <spellers@...> Subject: Re: rheumatic Re: New Here rheumatic Date: Saturday, December 20, 2008, 10:47 PM I need to disagree. Maybe I am just lucky, but I go to a top rheumatologist in NYC, and he tried me on the antibiotics. When he saw how amazing my reaction to them was, he kept me on them. When the doxycycline stopped working for me, I had no problems having him prescribe minocycline. At first he had tried me on the usual rheumie drugs, but he was definitely open to other things, when they didn't work for me. I have now started the l-lysine treatment that I read about on this website (thanks Soheila). I do really well now with my reactive arthritis, except for when the rain or snow comes in, and then I'm in so much more pain, and I am also so much more tired. I'm hoping that the l-lysine will take care of that. I had experience with a infectious disease doctor that my rheumie sent me to at the beginning of this illness, but he wanted to have nothing to do with me. This wasn't my first bad experience with I.D.'s. I don't have much respect for them. Mona rheumatic Re: New Here Emma, BTW, I think the person you're thinking of is Connie H. I had emailed her but it bounced Hope she is OK. > > > > > Hi all, > > > > > > My name is and I was diagnosed with a rare autoimmune > disease > > > called Relapsing Polychondritis (RP) about one year ago. I'm > currently > > > on 15mg/week of Methotraxate and recently stumbled upon > information > > > linking autoimmune disease to intra-cell bacteria. This has given > me a > > > new ray of hope as I'm not crazy about taking Metho. > > > > > > I have so many question along with some healthy skepticism, I'm > not > > > sure where to start. Is there anyone here with RP and has AP > helped you? > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 Hi Eva, This just goes to show that all we all react differently to same & different antibiotics. There is no one antibiotic that fits all. Minocin, seems to work on micoplasmas best. But there are many Cell-wall-deficient bacteria we carry, that we must keep experimenting  with various antibiotics until we are able to kill off the offending organisms. Biaxin may be great for you and not for another. I think we need lots of research to get to the bottom of the problems. It is going to take many many years before a cure is found and then some new germs will be found and then we start again searching for a cure for those germs. This is a never ending battle. All we can do is keep trying. My best to you all, Dolores  From: rbblk <spartacus1_1@...> Subject: rheumatic Re: New Here rheumatic Date: Saturday, December 20, 2008, 1:58 PM Mike, Delores, and Emma, Thanks for all your thoughts. I've ordered the " New Arthritis Breakthrough " which will hopefully answer some more of my questions. Is the theory behind all this that ALL autoimmune diseases are really just infectious, OR that some infectious diseases mimic autoimmune disease? For instance, I know that Lyme disease it the great mimicker. If it is the latter, than it seems like having a full panel of testing would be very important, otherwise AP could be useless. If the former, than this raised my skepticism a little more because it wouldn't explain why a stem cell transplant which effectively replaces one's immune system will put a patient into remission, or why T-cell vaccines work. Anyway, maybe it's not important and if AP works even if the exact mechanism is not known it really doesn't matter. I'm so exhausted with study in the past year. One thing I've learned is that you have to be your own advocate...and I realize that. But, quite frankly from what I've read so far it seems like AP is much more complicated—if you want to do it right—than traditional treatments because there are a whole spectrum of diseases that one needs to be tested for and then treated with the appropriately ABXs and dosages accordingly. Are there Doctors out there that I can trust to leave this all to them without having to spoon feed them and double check everything? I've heard some good things about Dr. Franco in CA. Am I making this out to be more complicated than it is, or do you all just get on Minocin without any specific infectious disease and microplasma testing? Thanks for your help and patience with me. > > > Hi all, > > > > My name is and I was diagnosed with a rare autoimmune disease > > called Relapsing Polychondritis (RP) about one year ago. I'm currently > > on 15mg/week of Methotraxate and recently stumbled upon information > > linking autoimmune disease to intra-cell bacteria. This has given me a > > new ray of hope as I'm not crazy about taking Metho. > > > > I have so many question along with some healthy skepticism, I'm not > > sure where to start. Is there anyone here with RP and has AP helped you? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 Thanks Ute! Except for a handful of Rheumy's across the nation, most Rheumy's are totally against using antibiotics. They were taught to depress the immune system and that, to me, does not make a whole lot of sense. How can we fight off diseases without and immune system intact? I just got so tired of fighting with Rheumy's and giving them handouts on A/P which, I'm sure got tossed into the garbage, that I was so delighted when I finally found a doc who understood me and is willing to give me any and all antibiotics I need and who is doing the correct blood work needed to find the offending bacteria or virus or fungus responsible for my diseases and treat them with the best antibiotic, antiviral or antifungal for that parasite or group of parasites. I feel, aaaahhhhh! At last I can rest knowing I'm going in the right direction. I wanted to pass that feeling on to those who are tired of struggling.  What a relief!-----My best to you Ute. Thanks, Dolores From: Ute <nowyoga@...> Subject: Re: rheumatic New Here rheumatic Date: Saturday, December 20, 2008, 1:01 PM Dolores, To look for an Infectious Disease specialist instead of a Rheumatologist is a great idea. Overall, Rheumatologists have not only not been helpful to us, but even detrimental. I just have been dealing with a naturopath and family doc who are prescribing abx for me, but I have " just " RA, kept well in check with AP, whereas many people on this list have complicated illnesses that need more medical care. Good suggestion! Take care, Ute Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2008 Report Share Posted December 21, 2008 Hi Dolores, This is what I'm struggling with. From what I read, it can take months if not years to see results from AP. Surely people aren't experimenting on which ABX combination to take...it could take a lifetime to to get it right, if ever. Is there a standard set of tests that should be done first to determine the right ABXs to fight the right bugs? What I meant by, " or do you all just get on Minocin without any specific infectious disease and microplasma testing? " , was not necessarily Minocin, but some random ABX combo. Or is there some rhyme/reason to the specific ABXs like blood testing to help target specific bugs. Sorry for all the questions but just trying to learn where to go next. > > > > > Hi all, > > > > > > My name is and I was diagnosed with a rare autoimmune > disease > > > called Relapsing Polychondritis (RP) about one year ago. I'm > currently > > > on 15mg/week of Methotraxate and recently stumbled upon > information > > > linking autoimmune disease to intra-cell bacteria. This has given > me a > > > new ray of hope as I'm not crazy about taking Metho. > > > > > > I have so many question along with some healthy skepticism, I'm > not > > > sure where to start. Is there anyone here with RP and has AP > helped you? > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2008 Report Share Posted December 21, 2008 Hi , You ask many questions that even the doctors don't know all the answers to. That is why, for the most part, doctors are hesitant to give antibiotics for long term. I, like you, had to weigh the options in the beginning. My disease is basically Scleroderma. It is a terminal illness, they tell me. So, when I was presented with either use steroids and toxic med, chemo and such or try A/P. Well, it didn't take a genius to realize that I had no options. I was definitely in the dying phase. I thought about Lance Armstronag who conquered over end stage cancer and with determination he fought back. That to me is a hero. If I did nothing, I would surely die a horrible death and fairly soon. If I took the toxic meds, all they could promise me was that I would be comfortable. A/P was a straw to draw to. I chose A/P after having read, " Scleroderma, The Proven Therapy Can Save Your Life " , by Henry Scammell. I looked at the title and saw that there was no promise there. The words stood out. The word Therapy told me this was just that. " A Therapy! " " Can save your life! "  No promise there either. It didn't say will save your life. It said Can. Either way, I was doomed. I had nothing to lose. Since that was the case, I took the plunge and went for the antibiotics. I don't know what others do. As for me, I have never looked back. Like I said before, I went from totally bedridden to totally functional. This life does not come with guarantees. Some day we will all die from something. It is the quality of life that counts. I believe as Dr. Franco believes that people should go for testing first before starting the antibiotics. At the time I chose, I hadn't heard about Dr. Franco nor read his writings. However, I did finally get tested and yes, for sure, there it was. I had micoplasma pneumonae and Epstein Barr. I may have others still and every day, we can become reinfected with something else. That is why I chose to do the Marshall. I will start adding my third antibiotic soon and go into Phase 3. The way I see it, this is a fight for lifetime. I am buying time and living better with antibiotics than I would have been without. As more and more info comes in, I am open to other protocols and will keep on fighting. I'm not counting time. We have little control of our births and death dates. Quality is what matters to me. Not all your questions have answers that I know of. Just research your disease and go with what your body tells you. If you are on antibiotics and have not seen any progress then, after giving it at least 6 months to a years trial, then keep on researching, keep on being tested and keep on trying for an antibiotic that will work for you. Whatever you do, do not take anything to suppress your immune system. You need that up and working well in order to fight back. Then add, nutrition, exercise, no smoking, no drinking and a healthy lifestyle. Get lots of rest and keep a good mental attitude. Make friends and give to others the knowledge you have learned and share your story so others can also benefit. You are doing the right thing by posting on this site. Find a site for your specific disease. Also remember, Some doctors label you without testing and the (disease label) may just not be totally correct or you may have overlapping diseases. That is not unusual. It is a long hard journey. So, my best to you and your search. Keep posting and sharing. Dolores & Mike    From: rbblk <spartacus1_1@...> Subject: rheumatic Re: New Here rheumatic Date: Sunday, December 21, 2008, 2:53 PM Hi Dolores, This is what I'm struggling with. From what I read, it can take months if not years to see results from AP. Surely people aren't experimenting on which ABX combination to take...it could take a lifetime to to get it right, if ever. Is there a standard set of tests that should be done first to determine the right ABXs to fight the right bugs? What I meant by, " or do you all just get on Minocin without any specific infectious disease and microplasma testing? " , was not necessarily Minocin, but some random ABX combo. Or is there some rhyme/reason to the specific ABXs like blood testing to help target specific bugs. Sorry for all the questions but just trying to learn where to go next. > > > > > Hi all, > > > > > > My name is and I was diagnosed with a rare autoimmune > disease > > > called Relapsing Polychondritis (RP) about one year ago. I'm > currently > > > on 15mg/week of Methotraxate and recently stumbled upon > information > > > linking autoimmune disease to intra-cell bacteria. This has given > me a > > > new ray of hope as I'm not crazy about taking Metho. > > > > > > I have so many question along with some healthy skepticism, I'm > not > > > sure where to start. Is there anyone here with RP and has AP > helped you? > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2009 Report Share Posted January 26, 2009 Has you son had a sensory integration evaluation? Pam A Good Credit Score is 700 or Above. See yours in just 2 easy steps! Quote Link to comment Share on other sites More sharing options...
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