Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 that sounds like my son. he is 4.5 with apraxia and when i hear him reciting things perfect and ask him to do it again it is all mumbles. the reading and memorizing i would not " worry " about, but contuinue to feed that craving he has to memorize. that is an awesome gift to be able to do that and you need to give him all that you can!!!! good luck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 Lori, Hi - remember me from the Kaufman seminar? I am so glad to hear of your sons progress. This is my very unprofessional opinion regarding sight reading. It relates to my typical 10 year old. When he was 3 the teacher taught him sight reading, read spiral books weekly with pictures etc. We were all so impressed. For him (may not be true for all), spelling was and still is a struggle. I think it is because of sight words. He doesn't know how to phonetically spell words. Also, his chapter (no picture) reading is poor. He skips words and guess what the concept is. He is very bright and overall has compensated for this. But I will not make the same mistake twice. All the best, Lori J. Mother to Matther 3 1/2 verbal apraxia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 lori j of course i remember you from the seminar. how is everything? sorry i haven't kept up with you. anthony has been doing very good with the increased vocabulary. it was just the reading that was getting to be a concern for me. his teacher told me to separate the flashcards so he doesn't keep reciting them by rote. but he can also spell them. he takes his upper and lower case puzzle and forms words out of them. his name, colors and his friends at school names. he floored me when he grabbed the capital e and told me elizabeth and then proceeded to spell it correctly. that's what was concerning me. i think this is too advanced for his age 3 1/2 and was starting to think it was more of an autistic trait. since his speech is starting to come in, he has been lining things up more too. i would love to sit back and say , " that's great that he can read and spell " . but i wonder if it's just another problem. but it's not asperger's because he had and still has a great deal of trouble speaking. actually it's strange...just discovered he has a lisp. never knew it before because he had such few words. plan on taking him to see finding nemo. i think he is ready for the big screen and since we have been without the tv for over 1 year; he'll love it. lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2003 Report Share Posted June 21, 2003 Hi ette, We have corresponded before, I want to urge you to ask Whitman for the flagyl/nizoral. Sentef also put me on natural progesterone cream, applied daily 1 mg. I started the flagyl, etc on April 9 of this year. Two months of herx. Now my energy is returning. Hands and feet have been major problems all along. Have not had my feet killing me for a month. Swelling is down in my hands, just a few slight tender areas. All along with the minocin my labs have made slow but steady improvements. In august I will have labs again and see if the labs match my clinical improvement. I have worked with Whitman, a good doctor. However when I e-mailed him several times suggesting the flagyl/nizoral he did not respond. Took matters into my own hands and scheduled an appt. with Sentef, bought a place ticket, and checked into the Holiday Inn in Dalton Georgia for the night. Costly yes, but for the improvements recently - priceless. I do think that progesterone cream is important piece of the puzzle for me. Always felt that there was an hormonal component to this malady. K On Saturday, June 21, 2003, at 07:57 AM, Warren Portnoy wrote: > I am asking anyone on our wonderful list for help. I have to tell a > little background first. > > I was on minocin for 10 years and I did wonderfully. I have RA. For > the last year, I have had bad flares and now some of my fingers are > becoming deformed. I also have had severe shoulder pains and now an > ankle that is swollen and has a spur on top of the arch part of the > foot. > > I have gone for two courses of clindamycin IV's and am going for a > third in two weeks. The IV's seem to help but only temporarily. I > also take doxycyclin in the evening, minocin, in the morning and take > clindamycin on Saturdays. > > I don't know what else to do. I've been having pains in my hands and > fingers, too. I have been thinking about asking for the " cocktail " > that some of you are on when I see my doctor, Dr. Whitman, next month, > after the IV's and blood work. Do any of you have any suggestions? I > really don't want to have to go on the stronger stuff - like embrel, > etc. but I don't know what else to do. Oh, I also take bextra or > volaren for inflammation and take Zyflamed, which Dr. Weil recommends. > > Any help would be greatly appreciated. > > I don't want to start having deformities that I could have prevented > by taking something. > > Thanks so much, > ette > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2003 Report Share Posted June 21, 2003 In a message dated 6/21/2003 7:04:21 AM Pacific Daylight Time, wport@... writes: > Do any of you have any suggestions? Yes, Explain to your doctor you have pain and tell him to prescribe you some opiates for the pain while you are waiting for the stronger antibiotics to kick in. No sense in compromising your immune system just to control pain. Here is a link to the California Pain Control law. Print it out and take it to your doctor. PS For my pain I take Codiene 4s and also for mussle cramps I taks Soma's You have to be careful mixing codiene and somas cause they together are like Synthic herion and will in fact keep a herion addict from going into the DTs when they run out of dope. If you do not want to be taking that combination, you could ask for either Lortabs or Vicodin for the pain opiate and flexoril for the mussle sspasms. I do not know where you live , but you have a right as a human being to have your pain issues treated with opiates. They will take care of your pain, so the antibiotics can do their job, hope this helps. Check out the link below. <A HREF= " http://www.paincare.org/pain_management/advocacy/ca_bill.html " >Pain Treatment Advocacy - California's Pain Patient's Bill of Rights</A> <A HREF= " http://www.paincare.org/pain_management/advocacy/ca_bill.html " >http://www.\ paincare.org/pain_management/advocacy/ca_bill.html</A> Ann Pritchard " Deep in the center of our beings is an infinite wealth of love " <A HREF= " http://www.rheumatic.org/medhist.htm " >http://www.rheumatic.org/medhist.htm\ </A> < latest published work. <A HREF= " http://groups.msn.com/TyroMedia/pictures " >http://groups.msn.com/TyroMedia/\ pictures</A> < latest photos <A HREF= " http://melungeon_music.tripod.com/melungeonmusic/ " >Melungeon Music</A> < 's Web Site Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2003 Report Share Posted June 22, 2003 Hi, , Dr. Sentef just had my daughter, Patti, do the saliva test to determine her hormone levels. She sent it off to the lab two weeks ago. They will send the results to Dr. Sentef. I'm confused, though, because I thought the purpose of her using the hormone cream was specifically to treat her multiple sclerosis. Also (boy, am I confused!), I thought the cream he and his pharmacist friend have concocted was estridiol, or estriol. I certainly didn't think it was progesterone. He's always so full of information to give us when we finally get to talk to him, that I think we don't always process what he tells us correctly! We are waiting to hear from Dr. Sentef to find out when Patti will start the hormone cream. Ellen Re: rheumatic Need help Hi ette, We have corresponded before, I want to urge you to ask Whitman for the flagyl/nizoral. Sentef also put me on natural progesterone cream, applied daily 1 mg. I started the flagyl, etc on April 9 of this year. Two months of herx. Now my energy is returning. Hands and feet have been major problems all along. Have not had my feet killing me for a month. Swelling is down in my hands, just a few slight tender areas. All along with the minocin my labs have made slow but steady improvements. In august I will have labs again and see if the labs match my clinical improvement. I have worked with Whitman, a good doctor. However when I e-mailed him several times suggesting the flagyl/nizoral he did not respond. Took matters into my own hands and scheduled an appt. with Sentef, bought a place ticket, and checked into the Holiday Inn in Dalton Georgia for the night. Costly yes, but for the improvements recently - priceless. I do think that progesterone cream is important piece of the puzzle for me. Always felt that there was an hormonal component to this malady. K On Saturday, June 21, 2003, at 07:57 AM, Warren Portnoy wrote: > I am asking anyone on our wonderful list for help. I have to tell a > little background first. > > I was on minocin for 10 years and I did wonderfully. I have RA. For > the last year, I have had bad flares and now some of my fingers are > becoming deformed. I also have had severe shoulder pains and now an > ankle that is swollen and has a spur on top of the arch part of the > foot. > > I have gone for two courses of clindamycin IV's and am going for a > third in two weeks. The IV's seem to help but only temporarily. I > also take doxycyclin in the evening, minocin, in the morning and take > clindamycin on Saturdays. > > I don't know what else to do. I've been having pains in my hands and > fingers, too. I have been thinking about asking for the " cocktail " > that some of you are on when I see my doctor, Dr. Whitman, next month, > after the IV's and blood work. Do any of you have any suggestions? I > really don't want to have to go on the stronger stuff - like embrel, > etc. but I don't know what else to do. Oh, I also take bextra or > volaren for inflammation and take Zyflamed, which Dr. Weil recommends. > > Any help would be greatly appreciated. > > I don't want to start having deformities that I could have prevented > by taking something. > > Thanks so much, > ette > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2003 Report Share Posted June 22, 2003 Hi Ellen, I think we corresponded recently on the subject of Dr. Sentef's hormone prescriptions. I just recently saw Dr. Sentef. His belief is that rheumatic diseases and MS are hormonally related, so he prescribes the hormone creams for both (he has a colleague at some nearby university - forget which - who is doing research on hormones and MS). He prescribes both progesterone and possibly estriol for RA (which surprised me greatly!). In my case, he prescribed progesterone and DHEA because my hormone levels for everything except estradiol were way below normal (DHEA is a precursor hormone. I have started the progesterone cream but am a bit leery of the DHEA as I recently had breast cancer...) Good references for information about hormones include any of Dr. Lee's books... I have his book " What Your Doctor May Not Tell You About Breast Cancer " . Dr. Sentef's rationale is that progesterone and estrogen is very high during pregnancy - a time when most rheumatic patients go into full remission. He says that nearly all rheumatic patients have depressed levels of one or more of these hormones. Dr. Lee believes that progesterone is the relevant hormone and is cautious about prescribing other hormones, including DHEA, although he says there is much evidence that the estriol estrogen may be beneficial in the prevention of reproductive cancers. He also recommends lower doses than Dr. Sentef does - I plan to email Dr. Sentef to ask him about that... Regards, EllenMcCool wrote: > Hi, , > > Dr. Sentef just had my daughter, Patti, do the saliva test to > determine her hormone levels. She sent it off to the lab > two weeks ago. They will send the results to Dr. Sentef. > > I'm confused, though, because I thought the purpose of her > using the hormone cream was specifically to treat her multiple > sclerosis. Also (boy, am I confused!), I thought the cream he > and his pharmacist friend have concocted was estridiol, or estriol. > I certainly didn't think it was progesterone. He's always so full > of information to give us when we finally get to talk to him, that > I think we don't always process what he tells us correctly! > > We are waiting to hear from Dr. Sentef to find out when Patti > will start the hormone cream. > > Ellen > > Re: rheumatic Need help > > > Hi ette, > > We have corresponded before, I want to urge you to ask Whitman for the > flagyl/nizoral. Sentef also put me on natural progesterone cream, > applied daily 1 mg. I started the flagyl, etc on April 9 of this year. > Two months of herx. Now my energy is returning. Hands and feet have > been major problems all along. Have not had my feet killing me for a > month. Swelling is down in my hands, just a few slight tender areas. > All along with the minocin my labs have made slow but steady > improvements. In august I will have labs again and see if the labs > match my clinical improvement. > > I have worked with Whitman, a good doctor. However when I e-mailed him > several times suggesting the flagyl/nizoral he did not respond. Took > matters into my own hands and scheduled an appt. with Sentef, bought a > place ticket, and checked into the Holiday Inn in Dalton Georgia for > the night. Costly yes, but for the improvements recently - priceless. > I do think that progesterone cream is important piece of the puzzle for > me. Always felt that there was an hormonal component to this malady. > K > On Saturday, June 21, 2003, at 07:57 AM, Warren Portnoy wrote: > > > I am asking anyone on our wonderful list for help. I have to tell a > > little background first. > > > > I was on minocin for 10 years and I did wonderfully. I have RA. For > > the last year, I have had bad flares and now some of my fingers are > > becoming deformed. I also have had severe shoulder pains and now an > > ankle that is swollen and has a spur on top of the arch part of the > > foot. > > > > I have gone for two courses of clindamycin IV's and am going for a > > third in two weeks. The IV's seem to help but only temporarily. I > > also take doxycyclin in the evening, minocin, in the morning and take > > clindamycin on Saturdays. > > > > I don't know what else to do. I've been having pains in my hands and > > fingers, too. I have been thinking about asking for the " cocktail " > > that some of you are on when I see my doctor, Dr. Whitman, next month, > > after the IV's and blood work. Do any of you have any suggestions? I > > really don't want to have to go on the stronger stuff - like embrel, > > etc. but I don't know what else to do. Oh, I also take bextra or > > volaren for inflammation and take Zyflamed, which Dr. Weil recommends. > > > > Any help would be greatly appreciated. > > > > I don't want to start having deformities that I could have prevented > > by taking something. > > > > Thanks so much, > > ette > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2003 Report Share Posted June 22, 2003 Hi I also did the minocin doxy and that did not work as wellas straight minocin did.Did that along with some periodic antifungals for 6 yrs. Also, 5 months ago I added flagyl and that does the trick for the hands!I take 500 aday and I also use an antifungal now. if you are not doing that, think about ti as the clindamycin can cause a lot of trouble with the yeast and that does cause extra flare symptoms!( for me anyway) A doc in GA recommends the antifungal with the minocin and flagyl as this way it targets many organisms. You must also take high doese of a good probiotic.i amusiong the primal defense and its exceptional! Marge > I am asking anyone on our wonderful list for help. I have to tell a little background first. > > I was on minocin for 10 years and I did wonderfully. I have RA. For the last year, I have had bad flares and now some of my fingers are becoming deformed. I also have had severe shoulder pains and now an ankle that is swollen and has a spur on top of the arch part of the foot. > > I have gone for two courses of clindamycin IV's and am going for a third in two weeks. The IV's seem to help but only temporarily. I also take doxycyclin in the evening, minocin, in the morning and take clindamycin on Saturdays. > > I don't know what else to do. I've been having pains in my hands and fingers, too. I have been thinking about asking for the " cocktail " that some of you are on when I see my doctor, Dr. Whitman, next month, after the IV's and blood work. Do any of you have any suggestions? I really don't want to have to go on the stronger stuff - like embrel, etc. but I don't know what else to do. Oh, I also take bextra or volaren for inflammation and take Zyflamed, which Dr. Weil recommends. > > Any help would be greatly appreciated. > > I don't want to start having deformities that I could have prevented by taking something. > > Thanks so much, > ette > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Ditto for me Mandi in UK Chelating son Sam The most important test I did on my own and that was the hair test. I do not use a doctor to chelate. I use ALA and Andy's protocol. When I have questions or worries I come here. No one can make you feel right about your decision you just have to trust yourself to make the right one. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 How many of you chelate on your own? How do you know what tests to do? >> I do it on my own, although I've been in touch with a local DAN doc who has authorized various tests -- thyroid, viral panel, etc. WHen I talked to her about doing liver testing, she said Andy's protocol is so low-dose that it really isn't necessary, unless I see signs something is off. When you chelated before, what happened? Nell Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 >When you chelated before, what happened? > >Nell I saw some good results, but just got scared going on my own, so I started looking for a doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 I dumped a doctor after spending thousands if dollars on useless testing and he kept putting off chelation. The most important test I did on my own and that was the hair test. I do not use a doctor to chelate. I use ALA and Andy's protocol. When I have questions or worries I come here. No one can make you feel right about your decision you just have to trust yourself to make the right one. Patti In , " Diane " <smiles2u@c...> wrote: > of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Hi Diane, I did a lot of reading, especially on this website, and decided I didn't have any more time to wait for doctors to maybe someday offer real help. I'd already given them seven years to see what they could do and it really wasn't much. ABA has been the best help, aside from biomedical things I've done, but I read here, in books, and on Danasview the positive reports of people who had done chelation and wanted to give it a try. It's been a year and I'm still scared, but I really do see some progress I don't think I'd have seen otherwise. My child was older when I started and research shows less progress the older they are. Still better a little than none. After eight years (daugher was adopted from an Eastern European orphanage at age two) of working to get her to say " Goodnight, Mama " she this month responded with those words and then two nights later said them without me saying anything. I only wish I had known and started this earlier. I had the hair test done, with off the chart numbers for lead and two out of three of the counting rules for mercury, and when I took them to a doctor to see what could be done, she said " Nothing. " Another doctor said that my daughter would excrete them on her own. Obviously not enough, by her autism. I took the plunge and found an alternative MD who is willing to sign for tests and offer bits of nutritional/supplement advice. Telling people we are seeing a doctor who supports us cuts down a lot of flack. The success stories on the net are very encouraging. Read the book " Turning Lead into Gold " by H. (sorry, I've forgotten her full last name) and you'll be encouraged even more. It's available from amazon.com. I'm buying more and passing them out to people I hope might pass on the information to those who need it. I continue to pray that my daughter will improve enough that those who know us will realize that I'm not just a desperate kook mom, but that our kids are poisoned and we CAN do something about it. I use Andy's protocol of DMSA and ALA (1/2 mg per pound of body weight) every three hours for six days on and eight days off. It seems to keep my daughter on a more even keel than the 3 on 4 off we did at first when adding the ALA. The ALA is getting a lot more junk out than just the DMSA did. Since starting chelation, my daughter has asked for her pills and has even taken some surprising initiative into trying to open the bottles and give them to herself. She really must like how they make her feel. Already her physical growth just this summer has really surprised me. People are commenting on how much taller she's become. She has always been very small in size. I just had to buy new clothes again after getting a larger size already in May. I'm rather disappointed a growth doctor (endocrinologist, I think it was) never even suggested lead or other poisoning or any testing that could have been done. I'm so thankful for this group. No, I'm SO THANKFUL for this group! Read, read, read and then ... Best wishes, Amy ) > I need help. I'm wanting to chelate my son. I've used Andy's protocol before, about 2 years ago, but quit. Felt a little overwhelmed and scared doing it without a doctor. I believe that protocol is the one I want to use, but I'm with a doctor now. I've asked twice what they do. All I've gotten out of them so far is they use ALA and glutithione, but didn't tell me any details. I'm anxious to start chelating. I've been with this doctor for 8 months now and it keeps getting put off, to run more tests, etc. I talked to them today becasue they want to do a genomics test to see if he's making glutithione because they said it is so important. They also want to do two other test first. One is a stool test to check for yeast (I already know you don't hold off chelating because of yeast, but they do) and an amino acid test, which I have no idea what that's for. They told me today that they won't chelate without these tests first. I'm starting to get upset about this. We don't have the money to keep pouring out to them. I don't know what to do. I want to just go ahead and start chelating, but then I would have to dump this doctor, which we've already spent a few thousand dollars on. Then I have to decide if I want to try to find another doctor or just go it alone. I know you can't really tell me what to do, but I'm felling so frustrated now, I could scream. How many of you chelate on your own? How do you know what tests to do? My ped might do whatever tests I ask. I just need some encouragement and thoughts from you all. Thanks. > > Diane > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Hi Diane, I did a lot of reading, especially on this website, and decided I didn't have any more time to wait for doctors to maybe someday offer real help. I'd already given them seven years to see what they could do and it really wasn't much. ABA has been the best help, aside from biomedical things I've done, but I read here, in books, and on Danasview the positive reports of people who had done chelation and wanted to give it a try. It's been a year and I'm still scared, but I really do see some progress I don't think I'd have seen otherwise. My child was older when I started and research shows less progress the older they are. Still better a little than none. After eight years (daugher was adopted from an Eastern European orphanage at age two) of working to get her to say " Goodnight, Mama " she this month responded with those words and then two nights later said them without me saying anything. I only wish I had known and started this earlier. I had the hair test done, with off the chart numbers for lead and two out of three of the counting rules for mercury, and when I took them to a doctor to see what could be done, she said " Nothing. " Another doctor said that my daughter would excrete them on her own. Obviously not enough, by her autism. I took the plunge and found an alternative MD who is willing to sign for tests and offer bits of nutritional/supplement advice. Telling people we are seeing a doctor who supports us cuts down a lot of flack. The success stories on the net are very encouraging. Read the book " Turning Lead into Gold " by H. (sorry, I've forgotten her full last name) and you'll be encouraged even more. It's available from amazon.com. I'm buying more and passing them out to people I hope might pass on the information to those who need it. I continue to pray that my daughter will improve enough that those who know us will realize that I'm not just a desperate kook mom, but that our kids are poisoned and we CAN do something about it. I use Andy's protocol of DMSA and ALA (1/2 mg per pound of body weight) every three hours for six days on and eight days off. It seems to keep my daughter on a more even keel than the 3 on 4 off we did at first when adding the ALA. The ALA is getting a lot more junk out than just the DMSA did. Since starting chelation, my daughter has asked for her pills and has even taken some surprising initiative into trying to open the bottles and give them to herself. She really must like how they make her feel. Already her physical growth just this summer has really surprised me. People are commenting on how much taller she's become. She has always been very small in size. I just had to buy new clothes again after getting a larger size already in May. I'm rather disappointed a growth doctor (endocrinologist, I think it was) never even suggested lead or other poisoning or any testing that could have been done. I'm so thankful for this group. No, I'm SO THANKFUL for this group! Read, read, read and then ... Best wishes, Amy ) > I need help. I'm wanting to chelate my son. I've used Andy's protocol before, about 2 years ago, but quit. Felt a little overwhelmed and scared doing it without a doctor. I believe that protocol is the one I want to use, but I'm with a doctor now. I've asked twice what they do. All I've gotten out of them so far is they use ALA and glutithione, but didn't tell me any details. I'm anxious to start chelating. I've been with this doctor for 8 months now and it keeps getting put off, to run more tests, etc. I talked to them today becasue they want to do a genomics test to see if he's making glutithione because they said it is so important. They also want to do two other test first. One is a stool test to check for yeast (I already know you don't hold off chelating because of yeast, but they do) and an amino acid test, which I have no idea what that's for. They told me today that they won't chelate without these tests first. I'm starting to get upset about this. We don't have the money to keep pouring out to them. I don't know what to do. I want to just go ahead and start chelating, but then I would have to dump this doctor, which we've already spent a few thousand dollars on. Then I have to decide if I want to try to find another doctor or just go it alone. I know you can't really tell me what to do, but I'm felling so frustrated now, I could scream. How many of you chelate on your own? How do you know what tests to do? My ped might do whatever tests I ask. I just need some encouragement and thoughts from you all. Thanks. > > Diane > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 >>asked twice what they do. All I've gotten out of them so far is they use ALA and glutithione, I used ALA for chelation, it worked very well for us. I recently added oral glutathione with good results, altho I don't believe it will chelate. >>I want to just go ahead and start chelating, I chelated my kids by myself. Here is my general info page http://www.danasview.net/chelate.htm Good luck. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 > I need help. I'm wanting to chelate my son. I've used Andy's protocol before, about 2 years ago, but quit. Felt a little overwhelmed and scared doing it without a doctor. Okay, think about what you want the doctor to do. This is in order to talk about it with doctor(s). > I believe that protocol is the one I want to use, but I'm with a doctor now. I've asked twice what they do. All I've gotten out of them so far is they use ALA and glutithione, but didn't tell me any details. I'm anxious to start chelating. I've been with this doctor for 8 months now and it keeps getting put off, to run more tests, etc. I talked to them today becasue they want to do a genomics test to see if he's making glutithione because they said it is so important. They also want to do two other test first. One is a stool test to check for yeast (I already know you don't hold off chelating because of yeast, but they do) and an amino acid test, which I have no idea what that's for. They told me today that they won't chelate without these tests first. I'm starting to get upset about this. We don't have the money to keep pouring out to them. I don't know what to do. I want to just go ahead and start chelating, but then I would have to dump this doctor, Consider a 3rd option, and additional options. The 3rd option is to tell the doctor that you are going to be chelating using x agents and x methods starting on x date, and that you would like a, b, and c kinds of support from the doctor. Be nice about it, of course. The doctor may or may not go along with this. Consider though that if you dump the doctor, you for sure don't have a doctor (at least not that one). If you tell the doctor your plan and ask for help, I think it is somewhat likely that the doctor will not cooperate--- but this depends on the doctor, and furthermore, even if they say they don't approve, if you have some medical problems along the way, unless they refuse to see you, you can still get help, AND they have been informed of what you are doing. If this option is not one you want to pursue, you can also consider using an approach LIKE the one above with other practitioners, including other doctors, naturopaths, etc. Proceeding " without a doctor " is also an option open to you--- I'm trying to point out that there are several options that are somewhere IN BETWEEN " having no doctor " and " having a doctor directing chelation " . I think many people end up using some " middle " option. > which we've already spent a few thousand dollars on. Then I have to decide if I want to try to find another doctor or just go it alone. I know you can't really tell me what to do, but I'm felling so frustrated now, I could scream. How many of you chelate on your own? How do you know what tests to do? My ped might do whatever tests I ask. I just need some encouragement and thoughts from you all. Thanks. I will answer for myself, although my situation is different because I was chelating myself. At first I wanted to just find someone to tell me what to do--- it all seemed FAR too complicated and confusing to me. Eventually I slogged my way through that and bought some ALA. I had " good " health insurance, and I live in the vicinity of at least 5 doctors who " do chelation " . I called all the doctors I could find and asked questions of the office folks about --how much the fee is for first visit and how long this visit takes --what methods are used for chelation (I got very little info on this) --on-going costs and how often they would want me to come in for checkups or whatever Maybe other stuff. That is what I remember. Basically the options to see a doctor seemed like a big hassle to me. I was not totally against it, but I also could not work up any enthusiasm for it. I saw the possibilities of spending time and effort on office visits where debating of methods prevails. I also saw possibly the office visits might result in LESS energy and enthusiasm for the undertaking at hand. I also saw no pressing problems that would benefit from seeing a doctor, no real " need " to see a doctor. So I decided to simply start out and see what would happen. I did not decide " I will never see a doctor " . I did not even decide " I am going to undertake long term chelation " . I was much more hesitant--- I was more like " I will try this procedure out and see if I can take a pill when the alarm goes off. I'll do it for a couple of rounds if I can. I will see how it goes. " Just as a note, I was seeing an acupunturist regularly at that time (still see her), and she was fully informed of what I was doing. One more thing you might try doing is listing ALL of the resources that are available if you need help along the way. I say this because I think " having a doctor " is ONE way of feeling that there is " help out there " when it is needed. But it is not the only way. For example, there are quite a number of practitioners of various kinds who I've seen in the past whom I could go to again for all different kinds of help; there are numerous lists I could write to; I have many many books about herbs, home treatments, and so on; I can call my acupunturist and get Chinese herbs for any acute condition; there are a few people locally who I know who are familiar with chelation who I could talk a problem over with; there are also all of the " acute care " facilities, hospitals and practitioners of all sorts who I might call on in an acute situation or emergency; and there are the several " chelation " doctors who I have not seen but could choose to see at any time. In other words, although the options may be " imperfect " , I have many options. good wishes, Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2005 Report Share Posted June 6, 2005 Hi, Welcome to the group! I too am located on Long Island. Where are you located? I'm in Ronkonkoma. --- In Plagiocephaly , " lvanellabuckley " <lvanella@a...> wrote: > My daughter needs help w2ith plagio-need local dr in Long island that > accepts BCBS HMO. Such a problem finding one!!! ANy info would be > greatly appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 > > > > > I'VE BEEN READING THIS FORUM FOR 2 YEARS > NOW.I WAS DX WITH MS IN NOV. 04. NO > PRIOR SYMPTOMS,NO FAMILY HISTORY.WOKE UP > ONE MORNING MY WHOLE HEAD WAS NUMB,OVER THE NEXT > 3 MONTHS I WAS NUMB EVERYWHERE,NO MUSCLE > TONE USED A WALKER TO GET AROUND THE HOUSE. > APRIL 05 LOST BOWEL AND BLADDER CONTROL, > WHICH IS STILL THE SAME. OCT.05 CAN'T WALK AT > ALL,TRY CRAWLING TO GET AROUND,WHICH IS > HARD.UNABLE TO FEED MYSELF AND TONS OF > OTHER THINGS. THANK GOD I HAVE 5 CHILDREN > TO HELP ME.THEY ARE 4-8-10-12-14.I STARTED LDN > DEC.05.NOT MUCH HAS CHANGED BUT I CAN TYPE > TO ALL OF YOU WITH 1 FINGER,BUT IN NOTEPAD > FIRST CAUSE IT TAKES AWHILE.MY WORST SYMPTOM > IS SEVERE TREMORS EVERYWHERE.I JUST KNOW I > COULD WALK AGIAN IF I COULD GET RID OF THEM. > I AM NOW 33 AND WEIGH 103. I WOULD REALLY > APPRECIATE ANY HELP.TAKE CARE EVERYONE. > VERONICA > ======= Since you've been reading forum that long have you done the Candida spit test to see if you have candida. If you haven't do so. If you test positive continue to read on further for natural ways to clean your body of candida. Ignore the google ads at top. Most people with MS have candida and mild to moderate candida can lessen the effects of LDN and severe candida can totally wipe out the effects of LDN. Low Dose Naltrexone Forum - Check yourself for Candida(yeast overgrowth)... http://ldn.proboards3.com/index.cgi?board=forum & action=display & thread=1129136093 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 veronica, My prayers are with you and all the rest of us suffering from this Monster.......Have faith, we all have to....This year is gonna be a doozy. 2 --- <sweethoota@...> wrote: > > > > I'VE BEEN READING THIS FORUM FOR 2 YEARS > NOW.I WAS DX WITH MS IN NOV. 04. NO > PRIOR SYMPTOMS,NO FAMILY HISTORY.WOKE UP > ONE MORNING MY WHOLE HEAD WAS NUMB,OVER THE NEXT > 3 MONTHS I WAS NUMB EVERYWHERE,NO MUSCLE > TONE USED A WALKER TO GET AROUND THE HOUSE. > APRIL 05 LOST BOWEL AND BLADDER CONTROL, > WHICH IS STILL THE SAME. OCT.05 CAN'T WALK AT > ALL,TRY CRAWLING TO GET AROUND,WHICH IS > HARD.UNABLE TO FEED MYSELF AND TONS OF > OTHER THINGS. THANK GOD I HAVE 5 CHILDREN > TO HELP ME.THEY ARE 4-8-10-12-14.I STARTED LDN > DEC.05.NOT MUCH HAS CHANGED BUT I CAN TYPE > TO ALL OF YOU WITH 1 FINGER,BUT IN NOTEPAD > FIRST CAUSE IT TAKES AWHILE.MY WORST SYMPTOM > IS SEVERE TREMORS EVERYWHERE.I JUST KNOW I > COULD WALK AGIAN IF I COULD GET RID OF THEM. > I AM NOW 33 AND WEIGH 103. I WOULD REALLY > APPRECIATE ANY HELP.TAKE CARE EVERYONE. > VERONICA > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 > > > > > > > > > I'VE BEEN READING THIS FORUM FOR 2 YEARS > > NOW.I WAS DX WITH MS IN NOV. 04. NO > > PRIOR SYMPTOMS,NO FAMILY HISTORY.WOKE UP > > ONE MORNING MY WHOLE HEAD WAS NUMB,OVER THE NEXT > > 3 MONTHS I WAS NUMB EVERYWHERE,NO MUSCLE > > TONE USED A WALKER TO GET AROUND THE HOUSE. > > APRIL 05 LOST BOWEL AND BLADDER CONTROL, > > WHICH IS STILL THE SAME. OCT.05 CAN'T WALK AT > > ALL,TRY CRAWLING TO GET AROUND,WHICH IS > > HARD.UNABLE TO FEED MYSELF AND TONS OF > > OTHER THINGS. THANK GOD I HAVE 5 CHILDREN > > TO HELP ME.THEY ARE 4-8-10-12-14.I STARTED LDN > > DEC.05.NOT MUCH HAS CHANGED BUT I CAN TYPE > > TO ALL OF YOU WITH 1 FINGER,BUT IN NOTEPAD > > FIRST CAUSE IT TAKES AWHILE.MY WORST SYMPTOM > > IS SEVERE TREMORS EVERYWHERE.I JUST KNOW I > > COULD WALK AGIAN IF I COULD GET RID OF THEM. > > I AM NOW 33 AND WEIGH 103. I WOULD REALLY > > APPRECIATE ANY HELP.TAKE CARE EVERYONE. > > VERONICA > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2006 Report Share Posted April 20, 2006 SORRY ALL,I WAS DX IN NOV.03 NOT 04. > > > > > > > > > > > > > > I'VE BEEN READING THIS FORUM FOR 2 YEARS > > > NOW.I WAS DX WITH MS IN NOV. 04. NO > > > PRIOR SYMPTOMS,NO FAMILY HISTORY.WOKE UP > > > ONE MORNING MY WHOLE HEAD WAS NUMB,OVER THE NEXT > > > 3 MONTHS I WAS NUMB EVERYWHERE,NO MUSCLE > > > TONE USED A WALKER TO GET AROUND THE HOUSE. > > > APRIL 05 LOST BOWEL AND BLADDER CONTROL, > > > WHICH IS STILL THE SAME. OCT.05 CAN'T WALK AT > > > ALL,TRY CRAWLING TO GET AROUND,WHICH IS > > > HARD.UNABLE TO FEED MYSELF AND TONS OF > > > OTHER THINGS. THANK GOD I HAVE 5 CHILDREN > > > TO HELP ME.THEY ARE 4-8-10-12-14.I STARTED LDN > > > DEC.05.NOT MUCH HAS CHANGED BUT I CAN TYPE > > > TO ALL OF YOU WITH 1 FINGER,BUT IN NOTEPAD > > > FIRST CAUSE IT TAKES AWHILE.MY WORST SYMPTOM > > > IS SEVERE TREMORS EVERYWHERE.I JUST KNOW I > > > COULD WALK AGIAN IF I COULD GET RID OF THEM. > > > I AM NOW 33 AND WEIGH 103. I WOULD REALLY > > > APPRECIATE ANY HELP.TAKE CARE EVERYONE. > > > VERONICA > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 , God bless you, you are going thru a hard time, and be prive sweetie, you have a lot to look forward to, and kids are great to have around. I live alone, but I'm not alone, and I know what your going thru, Iv been there, and it gets better everyday, really, it does. hang in there, Gale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 Hi , Regarding question 2, your new insurance should have sent you a packet that lists or explains what services are covered and under what circumstance. Typically, insurance reps will not discuss criterias for qualifying for services as we can make providers make it seem as a necessity. In your case, it is a medical necessity but their policies dont allow them to dicsuss. I would request for a packet of covered service if you dont have one. Thanks Milly > > Hi all, > > I need help with 2 things. > > 1. Awhile back I remember a post with I think links to websites that stated > the long term effects of untreated plagio but I can't find the posts. Does > anyone have those links? > > 2. I just called my new insurance company and asked them what the criteria > is for qualifiying for a helmet. They wouldn't tell me. They said they > don't tell people because than the doctor can write the criteria even if > it's not true. Can they do this? I thought they had to tell me? > > My son is now 18 months, 15.5 months adjusted age. I know he's at the age > where minimal if any correction will happen. We started this process last > October and were denied 3 times. Than we moved and even if I had set up a > payment plan, I was told by starband (which is the band they used back home) > that there was no one within a 2 hour radius of where I moved to who would > be able to do the adjustments. So, we JUST got our new insurance and are > starting all over. I was originally told by the orthotist back home that > kids only have to 18 months adjusted age for correction, but my son's PT > said it's till the age of 2. What do you all think about that? > > Pearce, > Syracuse NY > > -- > Pearce > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 See if they are able to give you very general information. When we called our insurance they told us it was based on age and what his measurements were. They did not tell us what those measurements were though. > > > > Hi all, > > > > I need help with 2 things. > > > > 1. Awhile back I remember a post with I think links to websites > that stated > > the long term effects of untreated plagio but I can't find the > posts. Does > > anyone have those links? > > > > 2. I just called my new insurance company and asked them what the > criteria > > is for qualifiying for a helmet. They wouldn't tell me. They said > they > > don't tell people because than the doctor can write the criteria > even if > > it's not true. Can they do this? I thought they had to tell me? > > > > My son is now 18 months, 15.5 months adjusted age. I know he's at > the age > > where minimal if any correction will happen. We started this > process last > > October and were denied 3 times. Than we moved and even if I had > set up a > > payment plan, I was told by starband (which is the band they used > back home) > > that there was no one within a 2 hour radius of where I moved to > who would > > be able to do the adjustments. So, we JUST got our new insurance > and are > > starting all over. I was originally told by the orthotist back > home that > > kids only have to 18 months adjusted age for correction, but my > son's PT > > said it's till the age of 2. What do you all think about that? > > > > Pearce, > > Syracuse NY > > > > -- > > Pearce > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 Hi Our Ins was giving us trouble so we paid for our DOC band and we plan to battle for reimbursement. we did this so we could get moving, we wanted to loose as little growing time as possible.If it is at all possible find a way to pay it on your own (make sure you have measurements and letters of medical need) then fight to get paid back.Be prepared for a long hall. It is standard to deny coverage and the first appeal, very few people take the time to do second and third appeals, that's how Ins. companies keep there money.Good luck.NikiPS. there are advocate groups out there who help with ins. fights. you may want to look into them. below is the website to one advocate I know of.HTTP://www.healthcareadvocates.com/mildred_balcer <mildred_balcer@...> wrote: Hi , Regarding question 2, your new insurance should have sent you a packet that lists or explains what services are covered and under what circumstance. Typically, insurance reps will not discuss criterias for qualifying for services as we can make providers make it seem as a necessity. In your case, it is a medical necessity but their policies dont allow them to dicsuss. I would request for a packet of covered service if you dont have one. Thanks Milly > > Hi all, > > I need help with 2 things. > > 1. Awhile back I remember a post with I think links to websites that stated > the long term effects of untreated plagio but I can't find the posts. Does > anyone have those links? > > 2. I just called my new insurance company and asked them what the criteria > is for qualifiying for a helmet. They wouldn't tell me. They said they > don't tell people because than the doctor can write the criteria even if > it's not true. Can they do this? I thought they had to tell me? > > My son is now 18 months, 15.5 months adjusted age. I know he's at the age > where minimal if any correction will happen. We started this process last > October and were denied 3 times. Than we moved and even if I had set up a > payment plan, I was told by starband (which is the band they used back home) > that there was no one within a 2 hour radius of where I moved to who would > be able to do the adjustments. So, we JUST got our new insurance and are > starting all over. I was originally told by the orthotist back home that > kids only have to 18 months adjusted age for correction, but my son's PT > said it's till the age of 2. What do you all think about that? > > Pearce, > Syracuse NY > > -- > Pearce > Take the Internet to Go: Go puts the Internet in your pocket: mail, news, photos more. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.