Guest guest Posted November 25, 2005 Report Share Posted November 25, 2005 , Are you on Social Security Disability? If you are you can work and make a certain amount of money per month without losing your benefits, but if you go over you can lose them and even though they will tell you it is really easy to get back on disability if you need to, I have been told by many here that it can take years. I personally think in your condition you are better off not working and using your energy to focus on taking care of you and your son. With this disease we have so little energy and I know you love your job, but what do you have left for you and your son after working all day. Nursing is not an easy job by any means and can be very physical as well. I know also in this economy many employers will just not put up with too many absences. I was laid off due to my health issues and the Judge basically said no one would employ me with my health issues. You can call you local SS office to find out how much you can make. I think they told me it was around 700 a month or so. Good luck to you. Lynn -- need advice hello everyone! i hope everyone had a good Thanksgiving.i need some advice from the group since ya'll know alot about this and really understand. i don t post alot but i really enjoy reading all of them. i don't know what i'd do without you. well i have had still's disease for 3 yrs. now and my first 2 yrs. was very bad i was out of work like many of you so i filed for disabilty. to make a long story short after all the fight i was just granted the disability. i am now back to work. i struggle very hard everyday to make it to work and stay at work. i just recently had surgery for the 3rd time in less than a year on my wrist and the dr said i'll continue to have surgery because the arthritis is so bad that it will continue to produce the fluid causing painful cyst that grow like tumors (very big very fast). i still have fevers very often, always tired and the story goes on as you all know. i constantly have to take off of work to go to my dr appts. and then have to make up work time. it is a constant struggle with work, my illness and taking care of my 3 yr old son. well enough of all that. my question is what would you all do? if i continue to work i lose the disability which as we all know if i'm okay today i could end up in the hospital tomorrow. or does anyone know if you can work at all with disability. i hate to turn it down and then have to take a leave of abscence from work without pay. i am a registered nurse and i work in a nursing home doing case management. i would not want to lose everything i went to school for. i love my job but i'm so confused right now and i just wonder how long can i keep struggling to make it. please give me some input. thank you monique --------------------------------- Yahoo! Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2005 Report Share Posted November 26, 2005 Hi Dani and , I'm a nurse too! Strange isnt it? I'm " still " working, but have a lot of pain. Due to my own fault by the way. I weaned myself off all of my meds. I know I'm paying the price, but I have plans to restart seeing a rheumy again soon.......I know shame on me....... I work in critical care pediatrics and I cant give it up. I'm the sole support for myself and my son (who's in college) and I know that I still have a lot of great nursing years left inside of me. I wonder if it's something that we've all been exposed to in our careers..........I know about the mycoplasmic connection and I did catch that bug about 10 months prior to my dx in 2001..........something to think about.......... Well, I'm off to work (nights, 7p-7a) Good luck to you both.......... Beth G in Houston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2005 Report Share Posted November 26, 2005 Dear , Hi my name is Danni and I am also a RN. I have been a nurse since I was 17. I am 34 now. I am also having a rough time. I was diagnosed in May 2005. I have been hospitalized several times since then and I have large tumors in my right wrist too. I also walk with a cane since 8/05 and have a difficult time getting around. I have alot of pain and swelling of several joints and run high fevers. I have a hard time breathing at times. But, enough about me. I just wanted you to know what I was going through so that I can tell you that I understand you not wanting to give up being a nurse. I love being a nurse but i also understand that if I am not feeling good than I am not taking care of my patients to the best of my ability. A applied for disability in 9/05 and have not heard anything yet. I am struggling. I can tell you that in some states you can work part time and still receive disability. If you have a lawyer ask him the rules of your state. I feel the pain in you in regards to not wanting to give up nursing. I just want you to feel better and not feel you are somehow letting people down by taking off time so that you can feel better. If you ever need someone to vent please call me at . I can also tell you that the Still's group and the wonderful , caring people associated with it helped me to see that I am still a nurse even if I am not right now ,and they helped me, beyond what I can express in words, to realize my health has to come first. Danni need advice hello everyone! i hope everyone had a good Thanksgiving.i need some advice from the group since ya'll know alot about this and really understand. i don't post alot but i really enjoy reading all of them. i breathing at don't know what i'd do without you. well i have had still's disease for 3 yrs. now and my first 2 yrs. was very bad i was out of work like many of you so i filed for disabilty. to make a long story short after all the fight i was just granted the disability. i am now back to work. i struggle very hard everyday to make it to work and stay at work. i just recently had surgery for the 3rd time in less than a year on my wrist and the dr said i'll continue to have surgery because the arthritis is so bad that it will continue to produce the fluid causing painful cyst that grow like tumors (very big very fast). i still have fevers very often, always tired and the story goes on as you all know. i constantly have to take off of work to go to my dr appts. and then have to make up work time. it is a constant struggle with work, my illness and taking care of my 3 yr old son. well enough of all that. my question is what would you all do? if i continue to work i lose the disability which as we all know if i'm okay today i could end up in the hospital tomorrow. or does anyone know if you can work at all with disability. i hate to turn it down and then have to take a leave of abscence from work without pay. i am a registered nurse and i work in a nursing home doing case management. i would not want to lose everything i went to school for. i love my job but i'm so confused right now and i just wonder how long can i keep struggling to make it. please give me some input. thank you , monique --------------------------------- Yahoo! Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2005 Report Share Posted November 26, 2005 I just read your message. I am new to the group, and it seems like all of you I am searching for a cause, not just a cure. I have very much thought about this disease being brought on by something that we have been exposed to. I am an archaeologist, and with my career I have traveled extensively and have worked in some really awful conditions. I have been concerned also because of some of the work that I have done involves excavations of burials. I believe that a lot of bacteria is still in the soil, and archaeologists are always working unprotected with what you touch and breathe in. I also have been diagnosed with mycoplasma 2 years ago and have been on antibiotics ever since and have been told I will most likely have to take it for life. I have tried being off of it, but my health pays dearly. I am sending you my best wishes and prayers. Mandy Tenderheart2308@... wrote: Hi Dani and , I'm a nurse too! Strange isnt it? I'm " still " working, but have a lot of pain. Due to my own fault by the way. I weaned myself off all of my meds. I know I'm paying the price, but I have plans to restart seeing a rheumy again soon.......I know shame on me....... I work in critical care pediatrics and I cant give it up. I'm the sole support for myself and my son (who's in college) and I know that I still have a lot of great nursing years left inside of me. I wonder if it's something that we've all been exposed to in our careers..........I know about the mycoplasmic connection and I did catch that bug about 10 months prior to my dx in 2001..........something to think about.......... Well, I'm off to work (nights, 7p-7a) Good luck to you both.......... Beth G in Houston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2005 Report Share Posted November 26, 2005 Hi , Most likely, you make too much money as a RN to work and collect disability. Stress has a tremendous impact on our disease. I was working as a RN when Stills Disease finally disabled me for good. As you know, Social Security makes you jump through a lot of hoops with their paperwork. When I was filing, it reduced me to tears many times. I wouldn't want to do it again. Your employer should have disability insurance, too. You are entitled to collect Social Security and disability from your employer's company. I do. Social Security will need to know what you collect from your employer's disability insurance. Ask your Rheumatologist and PCP what they recommend. From what you have written, it sounds like it would be best to stay on disability. The Human Resources Department of the hospital where you work should be able to help you file for Long Term Disability. Best of luck to you. Keep us informed and ask more questions if necessary. In Peace, Barbara Ventura, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2005 Report Share Posted November 27, 2005 Well while we're counting - I'm a nurse as well. Or was. I stopped working when I had my 3 children and thought about going back just before I got ill. Now I'm not too employable, I suspect. Ah well. I'd love to go back to A & E or anesthetics, which were two areas I really enjoyed. I have huge admiration for anyone who is still able to work with all the health problems Stills brings. Love to all. C2(UK) > Hi Dani and , > > I'm a nurse too! Strange isnt it? I'm " still " working, but have a > lot of > pain. Due to my own fault by the way. I weaned myself off all of > my meds. I > know I'm paying the price, but I have plans to restart seeing a > rheumy again > soon.......I know shame on me....... > > I work in critical care pediatrics and I cant give it up. I'm the > sole > support for myself and my son (who's in college) and I know that I > still have a lot > of great nursing years left inside of me. > > I wonder if it's something that we've all been exposed to in our > careers..........I know about the mycoplasmic connection and I did > catch that bug about 10 > months prior to my dx in 2001..........something to think > about.......... > > > Well, I'm off to work (nights, 7p-7a) Good luck to you > both.......... > > Beth G > in Houston > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2005 Report Share Posted November 27, 2005 To all Work if you can but also know when to stop for your self and your family's I know some are the family sole support .I also know that with disability it is not much and not easy to make ends meet . (Been there doing that ) a few words to all on this one file and then apeal on your own . Always fallow up any thing you file if you hear nothing in 90 days but I would before that like every 30 days if tuned down once you can do it again alone but I would get a lawyer and no way would I not have one if tuned down two times .the cost of a lawyer are set by ssi . Two get concealing for your self and your family members as this will change your life in many ways and after a time not all will seam so bad . I have been dignosed from 9/2001 then devorced in 2002 over it as I was no longer a paycheck to the ex ( My ex wife did that to me ) do not self medicate ( I am guilty as sin on this one ) learn to live life again but this time take the time to smell the flowers look at the clouds take time out for the small things that when were working and rushing threw life we miss this is a gift if you Take it this still thing has given you. Time to enjoy the small thing. At lest for my self I now know I rushed threw them before and have been given a second chance to enjoy what really matters in life .I can tell you it is not your job .not what you have . What you can do. Just take care of your self and then you can be good for your family's and the world at large . This is how my life changed . Full time worker I was my job my identity was my work now I am a man with time to see and enjoy things that I passed by before .yes I do get depressed after all I was raised that a man was to support his family and now I can not even support my self but I have time to enjoy and set back and sort out what is imported to me . This is what I found my faith and God , my kids and my feunceee my family . I would love to work again but on most days I am okay with things now has not been easy getting here but the trip has become worth it . But if we do not take care of our self's then what good are we to our kids or family's . Right Have a good day all and look for the sunrises in your life hugs all and lets kick some dragon butt okay! Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2005 Report Share Posted November 27, 2005 Yay Marty!!!! You are so right, we are not our jobs!!! I was so caught up in that, that I did not really know who I was at all. Also, for those of you on a super tight budget, check out these websites. www.lowermybills.com- you can find the lowest rates on insurance, phone, cable etc here. www.mybargainbuddy.com-subscribe to the newsletter and get the best info on how to save money every day, super site!! Email me privately if you want other tips on saving money and making what you have stretch further. I went from living on apx. 43.000 a year when I was working to nothing for 3 years and now I average apx. 12,000 on SS. I am doing better with my money now than when I worked. Lynn -- Re: need advice To all Work if you can but also know when to stop for your self and your family's I know some are the family sole support .I also know that with disability it is not much and not easy to make ends meet . (Been there doing that ) a few words to all on this one file and then apeal on your own . Always fallow up any thing you file if you hear nothing in 90 days but I would before that like every 30 days if tuned down once you can do it again alone but I would get a lawyer and no way would I not have one if tuned down two times .the cost of a lawyer are set by ssi . Two get concealing for your self and your family members as this will change your life in many ways and after a time not all will seam so bad . I have been dignosed from 9/2001 then devorced in 2002 over it as I was no longer a paycheck to the ex ( My ex wife did that to me ) do not self medicate ( I am guilty as sin on this one ) learn to live life again but this time take the time to smell the flowers look at the clouds take time out for the small things that when were working and rushing threw life we miss this is a gift if you Take it this still thing has given you. Time to enjoy the small thing. At lest for my self I now know I rushed threw them before and have been given a second chance to enjoy what really matters in life .I can tell you it is not your job .not what you have . What you can do. Just take care of your self and then you can be good for your family's and the world at large . This is how my life changed . Full time worker I was my job my identity was my work now I am a man with time to see and enjoy things that I passed by before .yes I do get depressed after all I was raised that a man was to support his family and now I can not even support my self but I have time to enjoy and set back and sort out what is imported to me . This is what I found my faith and God , my kids and my feunceee my family . I would love to work again but on most days I am okay with things now has not been easy getting here but the trip has become worth it . But if we do not take care of our self's then what good are we to our kids or family's . Right Have a good day all and look for the sunrises in your life hugs all and lets kick some dragon butt okay! Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2005 Report Share Posted November 28, 2005 Lynn: thanks for the web sights. I will look into them as saving money has always been something I enjoy LOL . Ya I know what you mean I went from living on 75 k a year with the wife to 40 k when I became ill to nothing also for three years . My mom gave me $250.00 a month to live on that had to cover my cell phone bill (only contact I had with my lawyer and kids in Idaho as I was in calif at the time ) my auto insurance and to feed my self all month . The hardest part was feeding my self as I was living no were and every thing had to be eaten out let me tell you I know were to get a hot dog . Chips and a drink for dinner at less then 2 bucks a shot LOL. Still even like hot dogs to LOL. To now living on about 14,000.00 a year not easy but can be done . I also now enjoy life more then ever Sept when I was spending time with my kids some thing the ex never lets me do now and both live over 700 miles away so travail money is not there just money to live month to month ( or as most know it check to check ) I know I would love to go back to work but what scars me is how long could I work? Just past the 5 year point so I have to go threw every thing again to get ssdi? That is why I do not besides I can not find any thing that will let me set my hours as I need them call in when ever I need to ect . So tell I find my own business that I can work any hour I want or day I will have to be happy on ssdi . But at lest I get in to the national parks for free and the state ones at a very low cost . But I now get to smell the flowers as I have slowed down like it or not but now I also know what is inported to me in life not how do I keep up with the or a I got to have this or that life . The bigger better home car ect Take care all hugs all and lets kick some dragon butt okay! Marty -- Re: need advice Yay Marty!!!! You are so right, we are not our jobs!!! I was so caught up in that, that I did not really know who I was at all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2005 Report Share Posted November 29, 2005 Beth, I can tell by the e-mail that you enjoy Nursing. I know I really enjoy it too. I was working until 8/05. As far as you being the sole income, I can relate. My Dad and my oldest brother (who has parkinsons) live with me. My dad takes care of my brother and since they live with me I feel I should pay everything. I think nurses are the most stobburn people you will ever meet. WE all love to help others but never ourselves. I sometimes try to find a reason that I was sticken with stills. I feel like this disease has taken alot from me. I loved going to work and I was the clown of the medical department. I just hope Beth, that you will not let yourself suffer like I did. I put off being treated til I was so sick I needed to be hospitalized. If there is ever a time you need someone to vent to about nursing e-mail me at blondedolphin172@.... I can also tell you that all the nurses in the stills group have helped me enormously. Please take there advice... They know more than anyone about how we feel. Danni Re: need advice Well while we're counting - I'm a nurse as well. Or was. I stopped working when I had my 3 children and thought about going back just before I got ill. Now I'm not too employable, I suspect. Ah well. I'd love to go back to A & E or anesthetics, which were two areas I really enjoyed. I have huge admiration for anyone who is still able to work with all the health problems Stills brings. Love to all. C2(UK) > Hi Dani and , > > I'm a nurse too! Strange isnt it? I'm " still " working, but have a > lot of > pain. Due to my own fault by the way. I weaned myself off all of > my meds. I > know I'm paying the price, but I have plans to restart seeing a > rheumy again > soon.......I know shame on me....... > > I work in critical care pediatrics and I cant give it up. I'm the > sole > support for myself and my son (who's in college) and I know that I > still have a lot > of great nursing years left inside of me. > > I wonder if it's something that we've all been exposed to in our > careers..........I know about the mycoplasmic connection and I did > catch that bug about 10 > months prior to my dx in 2001..........something to think > about.......... > > > Well, I'm off to work (nights, 7p-7a) Good luck to you > both.......... > > Beth G > in Houston > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2005 Report Share Posted November 29, 2005 Hi Marty, I think your e-mail touches home. We are not our jobs. I think some people identify themself with a specific job. I know I am guilty. I love being a nurse. I also have to try and find away of understanding that right now i am not able to be working. I just applied for SSI. I think I have sent them everything except blood and I think the next batch of papers will ask for it .... It is difficult when all of us are used to higher incomes. I think for me , since not being able to work, I am thankful for family and friends. I am so glad I have the group. Sometimes we do not always take the time to look around and enjoy life. Thanks for making me stop for a moment and look around. Danni Re: need advice To all Work if you can but also know when to stop for your self and your family's I know some are the family sole support .I also know that with disability it is not much and not easy to make ends meet . (Been there doing that ) a few words to all on this one file and then apeal on your own . Always fallow up any thing you file if you hear nothing in 90 days but I would before that like every 30 days if tuned down once you can do it again alone but I would get a lawyer and no way would I not have one if tuned down two times .the cost of a lawyer are set by ssi . Two get concealing for your self and your family members as this will change your life in many ways and after a time not all will seam so bad . I have been dignosed from 9/2001 then devorced in 2002 over it as I was no longer a paycheck to the ex ( My ex wife did that to me ) do not self medicate ( I am guilty as sin on this one ) learn to live life again but this time take the time to smell the flowers look at the clouds take time out for the small things that when were working and rushing threw life we miss this is a gift if you Take it this still thing has given you. Time to enjoy the small thing. At lest for my self I now know I rushed threw them before and have been given a second chance to enjoy what really matters in life .I can tell you it is not your job .not what you have . What you can do. Just take care of your self and then you can be good for your family's and the world at large . This is how my life changed . Full time worker I was my job my identity was my work now I am a man with time to see and enjoy things that I passed by before .yes I do get depressed after all I was raised that a man was to support his family and now I can not even support my self but I have time to enjoy and set back and sort out what is imported to me . This is what I found my faith and God , my kids and my feunceee my family . I would love to work again but on most days I am okay with things now has not been easy getting here but the trip has become worth it . But if we do not take care of our self's then what good are we to our kids or family's . Right Have a good day all and look for the sunrises in your life hugs all and lets kick some dragon butt okay! Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2005 Report Share Posted November 29, 2005 Dani. Thanks so much for your kind words..........I'm very lucky to have a great employer and fellow employees that pitch in and help me.........You're so right about nurses being so stubborn tho..........I work my butt off for those 12 hours, then I come home and collapse........I'm tired of being tired.....On another note. My son is going to school in Texas, he wants to be a prof. football player (who am I to tell him he cant?) I asked him what his charity of choice would be when he " makes it big " He said it would be the Still's Foundation. He said it breaks his heart that he's not here enough to help me anymore.........Am I lucky or what? beth g Houston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2005 Report Share Posted November 29, 2005 Hi again Danni. Marty's email does hit home..........We are not our jobs. I guess I'm just lucky that I have found my calling, and I truly believe it's a calling for me. Out of High School I went to a local college and thought that I was going to change the world with a psychology degree. I got bored, worked for Deere in Moline Illinois, did some modeling.........Joined the Marines in 1981, did 4 years. Moved on to computer work in Baltimore after my son was born. Then I went to nursing school when I was 31...........My work is such a welcome distraction for me..We all have such a great purpose in this group and it doesn't matter if we're employed or not...taking care of ourselves and being here for each other is what counts............. Beth. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2005 Report Share Posted November 29, 2005 Beth, I agree that we all have a purpose. I love helping others and I think my frustration comes from not being able to do it now. I have such a control issue and I am not able to control stills. I think being in this group is very important. I would not be able to fight without everyone's help and encouragement. Danni Re: need advice Hi again Danni. Marty's email does hit home..........We are not our jobs. I guess I'm just lucky that I have found my calling, and I truly believe it's a calling for me. Out of High School I went to a local college and thought that I was going to change the world with a psychology degree. I got bored, worked for Deere in Moline Illinois, did some modeling.........Joined the Marines in 1981, did 4 years. Moved on to computer work in Baltimore after my son was born. Then I went to nursing school when I was 31...........My work is such a welcome distraction for me..We all have such a great purpose in this group and it doesn't matter if we're employed or not...taking care of ourselves and being here for each other is what counts............. Beth. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2005 Report Share Posted November 29, 2005 I miss going to work as a nurse too. It has been ..lets see...June of 1993 that I last worked. My little one is in Kindergarten now but I can't count on my health. Just recently I slept 14 hours a day and fell asleep on my bed with my coat and boots on. Not too impressive...not resume material...then there are good days...I am also so so so grateful for this group. Hoping you all have a good day today Love Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2005 Report Share Posted December 3, 2005 Beth, You are very lucky to have a son who loves you. I hope he does make his dreams come true. I will keep that in my prayers. I know what you mean about running for 12 hours and then by the time you leave your house to go to work and back your day became a 14 hour day. I have to tell you that I admire you continuing to work. I hope that you remember to take the time to care for you so that you can continue to help others. I know your son wants you to be careful and take care of you so that you are not in pain. With me I see how this disease affects my fiance But I can not imagine what your son feels. Take care of yourself. When I first started in the group I was working alot and had to be hospitalized. The members in the still's group really helped to realize I had to take care of myself. I have a very hard time with that. I thank God everyday for the friends I have in the group. They have been my lifesavers. Love, Danni Re: need advice Dani. Thanks so much for your kind words..........I'm very lucky to have a great employer and fellow employees that pitch in and help me.........You're so right about nurses being so stubborn tho..........I work my butt off for those 12 hours, then I come home and collapse........I'm tired of being tired.....On another note. My son is going to school in Texas, he wants to be a prof. football player (who am I to tell him he cant?) I asked him what his charity of choice would be when he " makes it big " He said it would be the Still's Foundation. He said it breaks his heart that he's not here enough to help me anymore.........Am I lucky or what? beth g Houston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2005 Report Share Posted December 3, 2005 I agree that we are all more than a jod or a paycheck. I think that we all feel like we should do more for the people in our lives. I do not think that we realize what the people in our lives really want. The other day my Dad was driving me to the doctors an hour and a half away. While we were in the car my father asked me what I want for christmas. I told him I wanted nothing. My Dad told me that I never ask for anything but yet you do for everyone else. My Dad ( who was in the marines and an MP) never shows any emotion started to cry and told me that all he wanted for christmas was for me to be painfree. I just cried. I can understand you want to give more but trust me all she wants is you. I am realizing that the people in my life want me not material posessions. Do not bet yourself up. I know it's easier said than done. I know I do not need anyone else to beat me up I manage to do it to myself. Danni Re: need advice Hi again Danni. Marty's email does hit home..........We are not our jobs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 We have done DMSA capsules, I prefer ALA 'cause Allie seems to get respiratory illness resulting in pneumonia when we used DMSA. I would suggest considering a 3-4 hr dosage rather than 8 hr as some DAN! docs recommend. (Someone pls correct me if I'm wrong on this, I think it's the DMPS that's considered safe every 8 hrs) The reason is the half-life of the DMSA is closer to 3-4 hrs and when you go 8 hrs you're sorta putting the child on a roller-coaster effect. That said, the issue of dosages is of big debate, there are those who do well with 8hr, but if she doesn't respond as well as you'd hoped I would put out the dosage issue because it could make all the diff in the world. The smaller the dosage the safer & you wanna make sure you're doing labs regularly to check organ function (I can't remember if it's liver or kidneys for DMSA)to ensure everything is okay. As to removing dairy, I would recommend Karyn Seroussi's " Unraveling The Mysteries of Autism and PDD " . It's a great book. Also, www.gfcfdiet.com is good and gfcfrecipes Yahoo! group has some wonderful people on it to help. HTH, Debi - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 Hi! Puddin'- Your name reminds me - my dad used to say " Puddin' Tame, ask me again I'll tell you the same! " LOL The best two books are by Andy Cutler, PhD, *Amalgam Illness*, and *Hair Test Interpretation*. The very best list for reliably safe chelation information, IMHO, is Autism-Mercury AT Yahoogroups DOT com (you know, how to type that properly into your browser, right? with punctuation signs and no spaces.) Get a hair test from Doctors Data Inc (DDI) and never be persuaded to do " challenge " tests with any chelator - also, never do any IV chelation. (I'm serious, any chelator that some doc wants to use IV can be used more safely on a low-frequent-dose chelation schedule.) If soemone doesn't agree with Andy Cutler's chelation advice then I say - kick 'em to the curb! HTH, .... > > Hi all. I took my daughter to see a DAN dr. today, > first visit. I was wondering if anyone has done oral > chelation. DMSA capsules. I thought I was ready to do > all this,but then I started thinking and worrying. Is > this safe. Any Advice? Also he recommended we remove > all dairy from her diet. Any good books on how to get > started?Thanks, Puddin' > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2006 Report Share Posted January 27, 2006 It's kidneys, more than liver, but getting both checked. AND making sure mercury *is actually an issue*. Not because some DAN doc says all autistics are toxic, because that isn't necessarily the case. I suggest independant verification, but that's largely because I don't trust most DAN docs, they killed one kid and have taken organs. Kassiane who was mercury arsenic and other stuff toxic, chelated, and is stilllllll autistic > > We have done DMSA capsules, I prefer ALA 'cause Allie seems to get > respiratory illness resulting in pneumonia when we used DMSA. I would > suggest considering a 3-4 hr dosage rather than 8 hr as some DAN! docs > recommend. (Someone pls correct me if I'm wrong on this, I think it's > the DMPS that's considered safe every 8 hrs) The reason is the > half-life of the DMSA is closer to 3-4 hrs and when you go 8 hrs > you're sorta putting the child on a roller-coaster effect. That said, > the issue of dosages is of big debate, there are those who do well > with 8hr, but if she doesn't respond as well as you'd hoped I would > put out the dosage issue because it could make all the diff in the > world. The smaller the dosage the safer & you wanna make sure you're > doing labs regularly to check organ function (I can't remember if it's > liver or kidneys for DMSA)to ensure everything is okay. > > As to removing dairy, I would recommend Karyn Seroussi's " Unraveling > The Mysteries of Autism and PDD " . It's a great book. Also, > www.gfcfdiet.com is good and gfcfrecipes Yahoo! group has some > wonderful people on it to help. > > HTH, > Debi > > - > Quote Link to comment Share on other sites More sharing options...
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