Guest guest Posted April 23, 2001 Report Share Posted April 23, 2001 - If you're working with a doctor, have them order a heavy metals toxicity hair test through Doctor's Data or Great Smokies Labs. I believe that there is a lab who will do one without doctor's orders, but I can't find the name of it in my records (I bet someone else on the list has it though). Kris aka@... [ ] Intro > Hi everyone, I joined this list a few months ago, but haven't really > had time to read or post. My 3 year old son has autism and I believe > chelation would help him. How do I go about finding out if he needs > chelation? He has made improvement with GFCF diet, vitamin > supplements, cod liver oil, etc. How do you go about testing for > levels of mercury? > > Thanks, > > > > > > > ======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2001 Report Share Posted April 23, 2001 Hello : I'm going to cut and paste a prior post from Moria that has addressed your question very completely and in depth but in a manner that is easy to digest. Hope it proves to be beneficial. In Christ's love and mine...Jen : ) Dear XXXXXXXXX Welcome, and glad to hear you plan to leave no stone unturned. Sounds like your child has had plenty of toxic exposures. Yes, a hair test is a good place to start. You have 3 choices for getting one: 1. ask a doctor to order one for you. (Either exisitng doc or some new doc you find) 2. You can order a hair test through Direct Lab Services. This test will be processed through DDI, and costs $79. call their Reno office at (877) 339-2444 or (775) 852-2170. The person to talk to is Bassett. They expect you to prepay, and will send the test kit(s) to your home. http://directlab.com 3. You can also order a hair test from www.bodybalance.com. BodyBalance is a separate division of Great Smokies Diagnostic Laboratory. This test costs $60, plus postage. You can order a " test kit " from their website, or by phone (888) 891-3061. It includes a legal release form that you will need to sign. If you happen to have a cooperative doc handy, then I would suggest that you do #1, and get the hair test through DDI. If you don't happen to have a cooperative doc handy, then I would do #2. It is faster than finding a doctor, and is easy enough. When you get the results, then you need to read the counting rules, posted on the autism treatment website at: /files/Counting%2BRules If it turns out that the hair test shows high lead, DMSA chelates lead (and mercury). How do you know which detox? Mostly by which metals are high. Is it completely safe? I guess it depends on what " safe " means to you. Some of the risks I know of are: 1. known side effects of DMSA and ALA-- I haven't read up on DMSA much--- but it can (fairly rare?) lower immunity in some people. Maybe someone who has the package insert can say more. ALA can also lower immunity in some people (who have high cysteine/sulfur). ALA also has a lot of known " positive " side effects-- it is used as an anti-oxidant supplement for all kinds of things. Several books on the subject available. 2. there is a risk of using a " bad " protocol and having the metal already in the body redistributed in a " worse " way. This is the risk that scared me the most...... You will also note that " what is the best/right protocol " is a very lively topic on this list. 3. it is LIKELY that you will have some temporary " negative " effects even if you or doing chelation effectively. Think about mercury stored in various places in the body. Now add an agent (DMSA/ALA) which loosens it up or stirs some loose. The only way for the mercury (or lead or anything else!) to get out of the body is through normal elimination routes: liver, kidneys, bowel. This means it goes through the bloodstream " on the way out " . This means someone who is doing effective chelation will have a HIGHER level of mercury in their bloodstream while they are doing chelation. SOME of the effects noted include more stimmy behavior, insomnia, and peeing a lot. (I'm not sure if the peeing part is from the agent itself or from the mercury.) Many/most people note different changes (both " good " and " bad " ) during the " on " and " off " parts of the chelation cycle. 4. chelation is a stress on liver and kidneys--- and probably other parts! This could be a " risk " for someone with weaknesses in these areas. Also, because of some of the stresses, SLOW chelation is considered safer. There are some " methods " (like DMPS injections) that some people use that are VERY stressful, as it involves a larger dose of the chelation agent, all at once. Not recommended. As for good books or websites, keep reading this list. And you can buy Andy's book: " Amalgam Illness: Diagnosis and treatment " It sells for $35 and you can order it from: http://hometown.aol.com/noamalgam If anyone knows of any website that spells it all out well, that would be cool. Maybe I should ask exactly what you want spelled out. I think that this article (two parts) is a very good intro to mercury poisoning. It is NOT about autism. And, I would recommend that you IGNORE what they say about chelation protocol. http://www.vrp.com/LibraryDetail.asp?LibrarySearch=mercury & id=461 http://www.vrp.com/LibraryDetail.asp?LibrarySearch=mercury & id=471 As for how to proceed and what doctor to use, I'm afraid you are going to have to figure out what to do about it. Finding doctors and/or convincing current doctors to work on this is one of the harder parts. Some people do proceed without a doctor who is orchestrating things. You will need to look into the risks, and figure out your own idea of how this will fit into your life. Oh! you asked if it really works. It seems to me it does. I base this on reading posts on this lists about people's results. I don't mean it works equally for everyone, or that it solves all problems. But, I have read a number of posts that indicate big positive changes, over a period of time. You might want to read: /files/KennysProgressReportsF rom This is kinda on the long side. It is a compilation of posts from about her child (Kenny)'s progress. It covers 6 months. I don't think you'll find any reulsts in black and white on this. Plenty of anecdotal info though. I'm starting to collect some of the posts about results on this list. It is only a tiny percentage of what is posted (we are all busy with our questions and how to etc). But, there is a lot of " my child is doing x now and never did before " scattered here and there. I won't comment on the vaccine questions. There are some experts on the list who can advise you on the ins and outs of whether past shots had mercury in them, and how to avoid continued poisoning in that area. best, Moria p.s. in case you haven't seen the FAQ, it is posted at: /files/Mercury-Autism%20FAQ On Mon, 23 Apr 2001 20:02:38 -0000 MomE2Dallas@... writes: > Hi everyone, I joined this list a few months ago, but haven't really > > had time to read or post. My 3 year old son has autism and I > believe > chelation would help him. How do I go about finding out if he needs > > chelation? He has made improvement with GFCF diet, vitamin > supplements, cod liver oil, etc. How do you go about testing for > levels of mercury? > > Thanks, > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2001 Report Share Posted April 23, 2001 You start with a hair test from DDI, then use Andy's " counting rules " (in the files) to see if the essential elements are screwed up. That shows you if your kids have mercury toxicity. The hair test isn't too expensive--around $50 to $75 I believe. Barb [ ] Intro >Hi everyone, I joined this list a few months ago, but haven't really >had time to read or post. My 3 year old son has autism and I believe >chelation would help him. How do I go about finding out if he needs >chelation? He has made improvement with GFCF diet, vitamin >supplements, cod liver oil, etc. How do you go about testing for >levels of mercury? > >Thanks, > > > > > > >======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2001 Report Share Posted April 23, 2001 > - > > If you're working with a doctor, have them order a heavy metals toxicity > hair test through Doctor's Data or Great Smokies Labs. I believe that there > is a lab who will do one without doctor's orders, but I can't find the name > of it in my records (I bet someone else on the list has it though). > > Kris > aka@m... Make sure it is NOT the 'heavy metal tox' test, but the regular hair element test that has essential elements as well as toxics. Then use the counting rules to interpret it. Andy > > [ ] Intro > > > > Hi everyone, I joined this list a few months ago, but haven't really > > had time to read or post. My 3 year old son has autism and I believe > > chelation would help him. How do I go about finding out if he needs > > chelation? He has made improvement with GFCF diet, vitamin > > supplements, cod liver oil, etc. How do you go about testing for > > levels of mercury? > > > > Thanks, > > > > > > > > > > > > > > ======================================================= > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2001 Report Share Posted December 17, 2001 : Welcome! My son, , is also 3. He also has motor planning issues. We have used ProEFA for nearly 2 months and haven't yet seen improvements in speech. We just increased his dose to 2-caps a day and will see if that helps. Best of luck with Luc and keep us posted on his progress. Margaret, 's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 As a parent, I think you should get several opinions and find the one you are comfortable with. This is so you can map out a program for your child .. . . it may mean therapy or a more active approach to language or stimulation at home. In this group, it appears parents are doing therapy along with home and diet measures . . .so as a parent --- I am comforted that there are many options to take. vicki [ ] Intro >Hi, >I'm not sure if intro's are encouraged on this list or not but I'm gonna go >ahead and send my intro. My name is Chasley Prater and we have two boys. >Chastin who is 4 1/2 and talks constantly and then their is Cole who is 2 >1/2 and doesn't say much at all. We live in Puyallup, Washington about 30 >minutes from Seattle. > >Cole was just diagnosed with Apraxia or that is what the speech therepist is >suggesting at this time. She still has to write up the test results and I >understand that takes a couple weeks. She recommends he starts therepy >twice a week for 45 minutes each time but isn't sure when he can start. > >I'm not totally convinced that he has apraxia. He understands almost >anything you tell him and can imitate any word when he is in the mood. But >he doesn't continue to use the words he says on a regular basis. He has >about 10 - 15 word vocabulary that he uses on a consistent basis. He hasn't >put 2 words together yet either. He wasn't very vocal when he was a baby >and he was late or at the high end of the average for developmental >milestones like crawling, walking and sitting up. He walked at 16 months >and crawled about 11 months. He has always been about 5 months behind of >the average kid but I would say that his motor skills are definately normal >for his age. He is a very easy, happy and laid back kid. > >I understand or I'm under the impression that it can take a couple sessions >with the therepist to really be sure of his diagnosis. I know that Cole >just clung to me throughout the whole evaluation and didn't say a word till >we left when he said bye bye. I think he will be starting in a preschool >pretty soon at a child development center and the therepist recommended that >I get him started in the process to go to a preschool through the school >system when he turns 3 in January. I started trying to sign to him and I'm >interested in learning about apraxia and anything that I can do to help his >speech along. > >Chasley > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 Welcome Chasley; I am a member of this group too. Angi, mom to Katelyn, 4 and , 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 Dear Chasley, My son Jack is 2 1/2 with oral Apraxia, SI and mild pdd. If you are not sure he has Apraxia, maybe you should have another evaluation, I brought Jack to 3 before I felt comfortable with what they were telling me and with good reasons as to why they thought he had Apraxia. Also he was not cooroperative at the 1st eval. so to me that was like not going at all. Every child with Apraxia is different my son Crawled at 6 months and walked at 11 1/2. He would make noise as a baby and said mama at 1 yr. but that all went away. Jack does not have any issues with fine motor skills, his receptive skills are alot stronger than his expressive. We started with Sign language and kept his signs to just a few, he picked up on those very easily and it kept his frustration levels down. We also gave him lots of praise when he would attempt a word and Speach Therapy has helped quite a bit, they gave us lots of tips and ideas on how to help him. I hope I was helpful, Eileen > > I'm not totally convinced that he has apraxia. He > understands almost > anything you tell him and can imitate any word when > he is in the mood. But > he doesn't continue to use the words he says on a > regular basis. He has > about 10 - 15 word vocabulary that he uses on a > consistent basis. He hasn't > put 2 words together yet either. He wasn't very > vocal when he was a baby > and he was late or at the high end of the average > for developmental > milestones like crawling, walking and sitting up. > He walked at 16 months > and crawled about 11 months. He has always been > about 5 months behind of > the average kid but I would say that his motor > skills are definately normal > for his age. He is a very easy, happy and laid back > kid. > > I understand or I'm under the impression that it can > take a couple sessions > with the therepist to really be sure of his > diagnosis. I know that Cole > just clung to me throughout the whole evaluation and > didn't say a word till > we left when he said bye bye. I think he will be > starting in a preschool > pretty soon at a child development center and the > therepist recommended that > I get him started in the process to go to a > preschool through the school > system when he turns 3 in January. I started trying > to sign to him and I'm > interested in learning about apraxia and anything > that I can do to help his > speech along. > > Chasley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 I guess you could say that maybe I just can't accept that he has apraxia yet. I think I will have to hear from a couple other people to come to terms with it. I can't help thinking that he could just be a late talker and one day he will start talking like crazy. Now, if he was 3 and still not talking I don't think I would have a problem accepting that he did have apraxia but the fact that he will be turning 2 1/2 the end of the this month and that some kids take longer to talk than others their could still be hope. I know the a family resource cordinator came over the day before the assesment and she had her own little test and he pretty much passed the speech part of it and so I can't help but wonder if he is just going to be a late talker but I do know the questions they asked can't really tell that much about him and she was no speech pathologist either. So I guess you could safely say I'm in denial still. My family and friends don't really believe their is anything wrong with Cole but my husband and I believe that he should be saying more now and that he needs help. I'm curious do kids with apraxia end up talking like regular kids after therepy? Also, I don't understand how come Cole can imitate any word with pretty good clarity but could still have a problem with getting words out. It just doesn't make since to me. Maybe I'm just not understanding what apraxia is. Chasley [ ] Re: Intro Dear Chasley, My son Jack is 2 1/2 with oral Apraxia, SI and mild pdd. If you are not sure he has Apraxia, maybe you should have another evaluation, I brought Jack to 3 before I felt comfortable with what they were telling me and with good reasons as to why they thought he had Apraxia. Also he was not cooroperative at the 1st eval. so to me that was like not going at all. Every child with Apraxia is different my son Crawled at 6 months and walked at 11 1/2. He would make noise as a baby and said mama at 1 yr. but that all went away. Jack does not have any issues with fine motor skills, his receptive skills are alot stronger than his expressive. We started with Sign language and kept his signs to just a few, he picked up on those very easily and it kept his frustration levels down. We also gave him lots of praise when he would attempt a word and Speach Therapy has helped quite a bit, they gave us lots of tips and ideas on how to help him. I hope I was helpful, Eileen > > I'm not totally convinced that he has apraxia. He > understands almost > anything you tell him and can imitate any word when > he is in the mood. But > he doesn't continue to use the words he says on a > regular basis. He has > about 10 - 15 word vocabulary that he uses on a > consistent basis. He hasn't > put 2 words together yet either. He wasn't very > vocal when he was a baby > and he was late or at the high end of the average > for developmental > milestones like crawling, walking and sitting up. > He walked at 16 months > and crawled about 11 months. He has always been > about 5 months behind of > the average kid but I would say that his motor > skills are definately normal > for his age. He is a very easy, happy and laid back > kid. > > I understand or I'm under the impression that it can > take a couple sessions > with the therepist to really be sure of his > diagnosis. I know that Cole > just clung to me throughout the whole evaluation and > didn't say a word till > we left when he said bye bye. I think he will be > starting in a preschool > pretty soon at a child development center and the > therepist recommended that > I get him started in the process to go to a > preschool through the school > system when he turns 3 in January. I started trying > to sign to him and I'm > interested in learning about apraxia and anything > that I can do to help his > speech along. > > Chasley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 HI and welcome to the group. I have found a lot of valuable information on this site, and the other parents are VERY supportive. If it makes you feel any better your son sounds just like my daughter. She crawled at 11 months and walked at 18 months. Her first word and only word for a loooong time was " Mom. " She is severly verbal apraxic, and her current vocabulary consists of approximately 60 words or sounds. I have been supplementing her with the Efalex and it has helped. I don't remember my daughter losing words, she just never had them. We are using sign, and that has helped tremendously. Otherwise, my daughter is fine. She has some coordination issues but, that is the apraxia coming out. She also has some minor balance issues, but that is due to the tiny hairs in her right inner ear, half of them are dead. This was due to her being given a small amount of antibiotics shortly after birth. But, my daughter is such a happy go lucky little girl, sometimes I wonder if she realizes that she has a problem. She is extremely shy around strangers, but once she gets to know you watch out, because she is very silly. >From: " Chasley " <Chasleyp@...> >Reply- >< > >Subject: [ ] Intro >Date: Thu, 10 Jan 2002 09:51:19 -0800 > >Hi, >Cole was just diagnosed with Apraxia or that is what the speech therepist >is >suggesting at this time. She still has to write up the test results and I >understand that takes a couple weeks. She recommends he starts therepy >twice a week for 45 minutes each time but isn't sure when he can start. > >I'm not totally convinced that he has apraxia. He understands almost >anything you tell him and can imitate any word when he is in the mood. But >he doesn't continue to use the words he says on a regular basis. He has >about 10 - 15 word vocabulary that he uses on a consistent basis. He >hasn't >put 2 words together yet either. He wasn't very vocal when he was a baby > > _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Chasley I live in Southern Washington, and from the sounds of things your son Cole, and my little boy Dylan (who is also 2 1/2 sound VERY similar - right down to the walking delay - Dylan was 15 months. I just got off the phone with his therapist and she said that she has always had the question of apraxia in her mind when dealing with Dylan. but, he imitates words and seems to be able to make a variety of sounds, its getting them on a consistent basis, and in sentences, thats been a problem. And getting him to talk outside of therapy sessions. I would like to talk to you off list if possible - it sounds like we are in a pretty similar situation, and we may have ideas for each other! Does Cole have any fine motor issues? or is it purely verbal? PJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 I would get another opinion but I just don't see how the evaluations gets the whole picture. When Cole was evaluated by the speech therapist he just clung to me and didn't interact with the pathologist. She gave me some very good reasons to why she suspects that he has apraxia and I did agree with them. Of course she had to go off the answers I gave her because she wasn't getting any information from Cole. I don't think she will really know for sure that he has apraxia till she spends some time with him and builds a repoire with him. Now, I would definitely get another evaluation done if I completely disagreed with her but I didn't at all. He shows quite a few signs of apraxia but I'm just not sure he shows a majority of the signs. She mentioned kids with apraxia have behavioral problems and it kinda threw me off because Cole shows no behavioral problems and he really doesn't show frustration when he can't get his point across. So for the time being I'm going to go with her diagnose and hope for the best case senario that he's just a late talker. But if I do come to a point that I'm just not agreeing with the pathalogist then I will definately get another opinion. My family and friends believe that their is nothing wrong with Cole and that he is just a late talker so I'm really trying to follow my own intuition and go with the fact that he needs help even if he is just a late talker. This group has already become a great help to me and I really value all the advice I'm getting. Thanks so much, Chasley [ ] Intro >Hi, >I'm not sure if intro's are encouraged on this list or not but I'm gonna go >ahead and send my intro. My name is Chasley Prater and we have two boys. >Chastin who is 4 1/2 and talks constantly and then their is Cole who is 2 >1/2 and doesn't say much at all. We live in Puyallup, Washington about 30 >minutes from Seattle. > >Cole was just diagnosed with Apraxia or that is what the speech therepist is >suggesting at this time. She still has to write up the test results and I >understand that takes a couple weeks. She recommends he starts therepy >twice a week for 45 minutes each time but isn't sure when he can start. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Yes, it definately does help to hear everybodies story. It's great to hear stories from each end of the spectrum. I have found that this group is a great support already, since I'm really not getting the support from my family at this time. I kinda think they think I'm just making a mountain out of a mole hill. I think my mom thinks Cole is to young to be diagnosed with a speech problem and that he is just going to explode with words anyday now! How old is your daughter now? I don't think Cole has more than 40 words in his vocabulary that he has said more than once and even less that he says on a consistent basis. Chasley [ ] Re: Intro > HI and welcome to the group. I have found a lot of valuable information on > this site, and the other parents are VERY supportive. If it makes you feel > any better your son sounds just like my daughter. She crawled at 11 months > and walked at 18 months. Her first word and only word for a loooong time > was " Mom. " She is severly verbal apraxic, and her current vocabulary > consists of approximately 60 words or sounds. I have been supplementing her > with the Efalex and it has helped. I don't remember my daughter losing > words, she just never had them. We are using sign, and that has helped > tremendously. Otherwise, my daughter is fine. She has some coordination > issues but, that is the apraxia coming out. She also has some minor balance > issues, but that is due to the tiny hairs in her right inner ear, half of > them are dead. This was due to her being given a small amount of > antibiotics shortly after birth. But, my daughter is such a happy go lucky > little girl, sometimes I wonder if she realizes that she has a problem. She > is extremely shy around strangers, but once she gets to know you watch out, > because she is very silly. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Chasely, You are right an evaluation with an uncooperative child is not going to tell you much. If it makes you feel any better my son never had behaviour issues. Although now at 3.6 he definitely likes the word NO! He too was very clingy during the early evals. Sadly by the time he got into pre-school he was so use to it that his more recent evals were a piece of cake and very accurate!! You are definitely doing the right thing by going ahead with therapy. I made the mistake early on by keeping the EI SLP who was awful because I didn't know any better. Once I requested a new one progress began. Follow your child's cues. Give him time to learn to work with the SLP but after a few months if they are not clicking move on! In terms of your family, we have all been there in one way or another. Rather than argue with them do what you are doing. Speech therapy never hurt anyone, so if they are right (which instictivly you know they aren't) no harm done!! Good luck! denise --- In @y..., " Chasley " <Chasleyp@w...> wrote : > I would get another opinion but I just don't see how the evaluations gets the whole picture. When Cole was evaluated by the speech therapist he just clung to me and didn't interact with the pathologist. She gave me some very good reasons to why she suspects that he has apraxia and I did agree with them. Of course she had to go off the answers I gave her because she wasn't getting any information from Cole. I don't think she will really know for sure that he has apraxia till she spends some time with him and builds a repoire with him. Now, I would definitely get another evaluation done if I completely disagreed with her but I didn't at all. He shows quite a few signs of apraxia but I'm just not sure he shows a majority of the signs. She mentioned kids with apraxia have behavioral problems and it kinda threw me off because Cole shows no behavioral problems and he really doesn't show frustration when he can't get his point across. > > So for the time being I'm going to go with her diagnose and hope for the best case senario that he's just a late talker. But if I do come to a point that I'm just not agreeing with the pathalogist then I will definately get another opinion. My family and friends believe that their is nothing wrong with Cole and that he is just a late talker so I'm really trying to follow my own intuition and go with the fact that he needs help even if he is just a late talker. > > This group has already become a great help to me and I really value all the advice I'm getting. > Thanks so much, > Chasley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 Hi Deb...welcome to our group. There isn't a sweeter, kinder, or more knowledgable group on the internet. I hope you get the answers & treatment you need soon. With Hope... Tess in NW Oregon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Hi Deb, Glad you found our group. I am 35, divorced, and have a 6-year-old son. I live in southwest PA and have family close by. It sounds as if you really do need a new rheumy. I love mine. He takes as much time as necessary for my appts and I see him every time I have an appt. He calls me personally when there is a prob with my labs and I can always get an appt when needed. The girls in the office are extremely patient and friendly also. On top of this, I always feel as if I am an important patient and he always answers my questions and makes me feel as if I am a part of my treatments. He asks my opinions about treatments and we discuss all aspects of my disease. I hope that you can find a rheumy that you are comfortable with soon as it makes dealing with a disease a little easier. Love and Hugs Stacey in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 hey deb, i'm kathy 42, widow almost 10 years and my son will be 19 in october. i've had trouble about 7 years now. mine started with carpal tunnel on both sides, had surgeries for that. went to my back and neck, i had tarsal tunnel surgeries last year, still having problems with tendonitis is different areas. won my ssd last year and fighting with my company over my disability benefits from them. you hve found a great group. i don't know what i'd do without this group!!! welcome kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2002 Report Share Posted October 20, 2002 Welcome, ! I'm happy you decided to introduce yourself. And, no, I don't think anyone here will tell you where to go, LOL!!! Sorry to hear that you are struggling with a lot of unknowns and pain right now. It's hard to lead any kind of a normal life under those circumstances. It's quite possible that your mood will improve if you can get better answers and more effective pain relief. Has the prednisone helped at all yet? That in itself can be a valuable clue when trying to determine the diagnosis. Did the x-rays you've had include any of your knees? Sorry to say that most of the labs available for the diagnosis of rheumatic diseases are fairly lame. I'm hoping that someone in the Nashville area reading this can help you by recommending some competent healthcare professionals. In the meanwhile, here are some links that may help: American College of Rheumatology " Find a Rheumatologist " : http://www.rheumatology.org/directory/geo.asp American Academy of Pain Management National Registry of Multidisciplinary Pain Practitioners: http://www.aapainmanage.org/aapm/memsrcht.html American Academy of Pain Management search to find an accredited pain management program: http://www.aapainmanage.org/aapm/ppdsrcht.html [ ] intro > Good Morning, > I have been lurking for several weeks and learning so much from this > list. It has quickly become my favorite . > I am going to be 45 next week with actually no firm diagnosis yet. > I have the dry eyes, ibs, severe severe pain in both knees ( doesn't > change with activity) which I have seen 4 doctors for in the last two > years and now the joints closest to the hands on my fingers are > hurting terribly and have been for several months. > I am single, live near Nashville Tennesee and would so appreciate > someone telling me where to go ( to find a good pain doctor and > someone who can give me some help and a dx). Hoping no one will tell > me really where to go LOL. I am a retired RN due to this, my house > is a mess, my family is sick of me being sick- and now I am to the > point that I am hiring someone to help me several days a week. > Actually haven't been in a store in weeks and weeks. I agree I am > depressed, but haven't found a med to help with that yet either. > Incidently I was born in Parrish Florida. > I breed and show Yorkshire Terriers, and have almost decided to stop > that- although they are the ones that make me get out of bed. > I am willing to travel wherever I need to so I can get help and get a > life. The RA dr. I went to last week started me on prednisone for a > month- my second visit to him saying that he did not know what was > wrong with me-that labs and xrays were normal. No relief from bextra, > celebrex and others. Sending everyone a hug on this dreary Sunday > morning. > 3005@... ( I am on digest form) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2002 Report Share Posted October 20, 2002 Hi ...welcome. I'm sorry you're feeling so awful. The folks here are so wonderful and will help you through these challenging times. Love... Tess in NW Oregon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2002 Report Share Posted October 21, 2002 Welcome . & Kathe have pretty much answered your questions, but I just wanted to say hi. I hope you don¹t give up your Terrier breeding. If you find the right cocktail of meds, you will feel better. Sometimes it takes awhile to get the right diagnosis and treatment. Until you do, try to hang in there and don¹t stress over the housework. If you can hire someone, that¹s great. Hopefully soon you will find out what is going on. a > Good Morning, > I have been lurking for several weeks and learning so much from this > list. It has quickly become my favorite . > I am going to be 45 next week with actually no firm diagnosis yet. > I have the dry eyes, ibs, severe severe pain in both knees ( doesn't > change with activity) which I have seen 4 doctors for in the last two > years and now the joints closest to the hands on my fingers are > hurting terribly and have been for several months. > I am single, live near Nashville Tennesee and would so appreciate > someone telling me where to go ( to find a good pain doctor and > someone who can give me some help and a dx). Hoping no one will tell > me really where to go LOL. I am a retired RN due to this, my house > is a mess, my family is sick of me being sick- and now I am to the > point that I am hiring someone to help me several days a week. > Actually haven't been in a store in weeks and weeks. I agree I am > depressed, but haven't found a med to help with that yet either. > Incidently I was born in Parrish Florida. > I breed and show Yorkshire Terriers, and have almost decided to stop > that- although they are the ones that make me get out of bed. > I am willing to travel wherever I need to so I can get help and get a > life. The RA dr. I went to last week started me on prednisone for a > month- my second visit to him saying that he did not know what was > wrong with me-that labs and xrays were normal. No relief from bextra, > celebrex and others. Sending everyone a hug on this dreary Sunday > morning. > 3005@... ( I am on digest form) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2002 Report Share Posted October 22, 2002 , I'm sorry that you have these problems like so many of the people here do. From what I understand and what my husband has experienced, it's very rare to find a good Rheuny the first time around. Or at least one that makes you feel comfortable. Hang in there and keep looking. I myself do not have RA but my husband does. He was diagnosed 4 years ago. In the beginning he was gun-ho about treating himself then it all wore off when he realized it was for life! After a couple years of trying to take care of an unwilling husband and 2 small kids I was very " sick and tired of him being sick and tired " ! I had to stop and realize that it was hard for him to accept just as much as it was for me. Sometimes it is harder in a way for the family members if they themselves don't have a painful, chronic illness to remind them how you feel. If your family is willing discuss all of your options with them, keep them posted after your appointments. If they are better on the computer than you are maybe they can " look things " up for you. Get some things that will help you work around the house easier so they can see that you are more productive when you have " help " . I can imagine it's hard. But you have come to a wonderful place for help. These people have helped me through one of the worst times of my life! They are wonerful, caring people! I wish you and your family blessings. Keri in MI > Good Morning, > I have been lurking for several weeks and learning so much from this > list. It has quickly become my favorite . > I am going to be 45 next week with actually no firm diagnosis yet. > I have the dry eyes, ibs, severe severe pain in both knees ( doesn't > change with activity) which I have seen 4 doctors for in the last two > years and now the joints closest to the hands on my fingers are > hurting terribly and have been for several months. > I am single, live near Nashville Tennesee and would so appreciate > someone telling me where to go ( to find a good pain doctor and > someone who can give me some help and a dx). Hoping no one will tell > me really where to go LOL. I am a retired RN due to this, my house > is a mess, my family is sick of me being sick- and now I am to the > point that I am hiring someone to help me several days a week. > Actually haven't been in a store in weeks and weeks. I agree I am > depressed, but haven't found a med to help with that yet either. > Incidently I was born in Parrish Florida. > I breed and show Yorkshire Terriers, and have almost decided to stop > that- although they are the ones that make me get out of bed. > I am willing to travel wherever I need to so I can get help and get a > life. The RA dr. I went to last week started me on prednisone for a > month- my second visit to him saying that he did not know what was > wrong with me-that labs and xrays were normal. No relief from bextra, > celebrex and others. Sending everyone a hug on this dreary Sunday > morning. > 3005@a... ( I am on digest form) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 Hi , Welcome to our group. I had to smile when I read your intro. So many things clicked with me. I am 35, divorced and have a 6 year-old son. I was diagnosed with RA almost 3 years ago. I used to work as a medical assistant until about a year and a half ago when I was fired because of my inability to perform certain duties due to my RA. They actually did me a favor. I filed for and was approved for disability benefits. I am sorry to hear that you are having such a hard time. I went through so many difficulties before my final dx. The pain and inability to live a normal life threw me into a depression also. I still have my days. I take Zoloft 100 mg/day and it helps tremendously. I was lucky to find a wonderful rheumatologist who is very agressive with treatment. He also does not give me a hard time with pain relief. I hope that your dr. is treating you as well. I grew up with Yorkshire Terriers for pets. My aunt lives near burg, PA and used to breed and show also. She has been retired for many years because of health probs. My parents had 3 Yorkies and the last one passed away last year of old age. They are the most incredible dogs that I have ever seen. They are so intelligent, loyal and fun to be around. And they are just so beautiful, inside and out. I miss them terribly. I'm sure they are great companions for you. I hope you get some relief soon. Love and Hugs Stacey in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2003 Report Share Posted November 19, 2003 Hi , Do you have any health issues that you're hoping to improve by changing your diet? > Hi, I am new to the list. I just wanted to introduce myself. My name is > . I have 4 kids ages 11, 9, 5, and 14 months. I am new to this kind of > diet and hope to learn more. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2003 Report Share Posted November 19, 2003 Besides some recent problems with my teeth, my health is pretty good. I am hopeing that it will help my son though. He has some attention problems. I think that they were caused by his MMR immunization, but that is a whole different topic. We have been using raw milk and raw milk products for many months now and I have been trying to switch over to better nutrition. Re: intro Hi , Do you have any health issues that you're hoping to improve by changing your diet? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2003 Report Share Posted December 8, 2003 Welcome, Michele! I have no personal experience with the problems you describe, but I think a lot of people on here would suggest you try raw animal protein and see if it also gives you eczema. It's easier for the body to digest and causes far fewer problems with allergies, etc. Start with raw egg yolks--they're the single most nutritious food in the animal kingdom, at least the most balanced. Make sure you're getting high quality organic eggs, pasture-fed, and preferably straight from a farm so you can see firsthand the conditions the chickens are in. But eggs from a health food store are a good start. Tom > Hello everyone! My name is Michele. I'm 25, single mother of > , age 2 1/2 yrs, college student(science major), working from > home and doing school via internet so I can stay home with Gaby. I > looked up this list after discussions with a local NT enthusiast and > reading information on the Weston Price website. I haven't read NT > yet, but I have read Native Nutrition, and my copy of NT is on it's > way. > > I have been vegetarian(mostly) since I was 18. The mostly is because > a month before I became pregnant - up until which point I was raw > vegan - I started eating alot of sashimi(raw fish), especially roe. > I discontinued this for fear of parasites in my second month of > pregnancy; I ate 2lb of salmon every day of my seventh month. > > I slipped back into eating foods like cuban crackers, french fries, > tortilla chips, etc due to very bad nausea and absolutely no > understanding of nutrition. This caused a return of leaky gut > syndrome I had previously cured(and associated asthma, > excema,migraines, also cancer, diabetes, obesity, etc) and in my > ninth month I had excema on my face. This and intense aggravation > with the lack of concrete info in the raw community led me to > furiously research every aspect of nutrition and the decision to > become a Registered Dietician. > > This search had led me here. My son's diet includes eggs, tofu(soon > to be removed), raw fruits, raw honey, nuts/seeds, veggies, and lots > of breastmilk. He is very robust(40''43lb) and healthy, and has none > of the problems I had at his age(asthma, chronic ear infections, > yeast infections, recurring bronchitis/strep throat etc). My diet is > currently raw vegan, but I am looking to change it because it is > unfortunately not curing my leaky gut this time around, and I am > craving fish. Any protein food(I have even tried turkey which didn't > stay in long ) causes excema on my face and hands - extremely mild > now thanks to enzymes and probiotics. > > If there is anyone in this list who has similiar experiences or > advice, I would love your help. I have been vegan because I do not > believe in unnecessarily harming animals, but I have absolutely > nothing against people who do eat meat. I know I cannot eat mammals > or birds, but I like fish and eggs. I know something is missing in > my diet, but am a bit wary of making changes due to my condition. > > Sorry to go on at such great length. Take care everyone and Happy > Holidays. > > Sincerely, > > Michele Quote Link to comment Share on other sites More sharing options...
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