Guest guest Posted March 13, 2001 Report Share Posted March 13, 2001 I have a great suggestion, My doctor (in Oregon) personally spoke with dr. Burrescano recently and he directed him to a gread web site: Chronicneurotoxins.com by a Dr. Shoemaker. This information and test is inexpensive and holds some real hope. Read the part about Lyme of course and go also to the research button on the left and click on Fibromyalgia, quite a bit of info including Lyme and the protocol. Let me know what you think. Sounds real promising to me. Teena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2001 Report Share Posted March 13, 2001 Teena, We talked about this awhile back. Seems like most people that had done this protocol got relieved only of $, not symptoms. I had thought about doing it, but after reading what others wrote, and talking to my own LLMD, decided against it. If you decide to do it, good luck and hope you find relief. Take care, Pepi Metzler Chocolates Fine Artisan candies, handmade with the finest ingredients. ___~----..,,. // ( )___ ) \.\ // // // \\ // // \\ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2001 Report Share Posted March 23, 2001 In a message dated 3/23/2001 11:32:20 AM Pacific Standard Time, writes: > For more information about this group, please visit > > > For help with , please visit > http://help./help/us/groups/ > > None of this helps my problem I switched from e-groups and if I try to > switch again they say that I have already switched and now when I try to > sign in with they always say something isn't right and I read and > nothing pertains to me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Beth, interesting article. Where do you buy tart cherry juice concentrate? Gayle, I am impressed with your Donor Alliance volunteering. I am going to try to find something like that here in Texas. KayK in Austin, AIH 1995/PBC 1999 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 please let us know where to get this at - haven't fully read the article yet - but wonder if its sorta the same as lemon juice every morning. paula /aih 4/00 Re: [ ] Digest Number 1716 > Beth, interesting article. Where do you buy tart cherry juice concentrate? > > Gayle, I am impressed with your Donor Alliance volunteering. I am going to > try to find something like that here in Texas. > > KayK in Austin, AIH 1995/PBC 1999 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Hi All, I went to my first volunteering training today. I met the staff at Donor Alliance and was quite impressed with the office and how intense of work they do for all of us. Today I helped get mail outs ready to send to honor the donor families of last year. They invite the families to come to a dinner seminar. They do a presentation to the families and give the families a medallion and a certificate and they are given a quilt piece to design to put on the quilt that travels all over the world. As well as a mention in the ongoing video they put together. They fed us and I signed up to become an official volunteer. I have to sign a paper kind of like application and as to what and how I want to volunteer. Anyone interested I was told you look for your local organ donor organization in your state. I have to have some purpose now. I can't work but this seems just right in order to get back into the world again after 2 years. Was fun. gayle trans/6-99 ^oo^ galye@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Hi All, I went to my first volunteering training today. I met the staff at Donor Alliance and was quite impressed with the office and how intense of work they do for all of us. Today I helped get mail outs ready to send to honor the donor families of last year. They invite the families to come to a dinner seminar. They do a presentation to the families and give the families a medallion and a certificate and they are given a quilt piece to design to put on the quilt that travels all over the world. As well as a mention in the ongoing video they put together. They fed us and I signed up to become an official volunteer. I have to sign a paper kind of like application and as to what and how I want to volunteer. Anyone interested I was told you look for your local organ donor organization in your state. I have to have some purpose now. I can't work but this seems just right in order to get back into the world again after 2 years. Was fun. gayle trans/6-99 ^oo^ galye@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Hi All, I went to my first volunteering training today. I met the staff at Donor Alliance and was quite impressed with the office and how intense of work they do for all of us. Today I helped get mail outs ready to send to honor the donor families of last year. They invite the families to come to a dinner seminar. They do a presentation to the families and give the families a medallion and a certificate and they are given a quilt piece to design to put on the quilt that travels all over the world. As well as a mention in the ongoing video they put together. They fed us and I signed up to become an official volunteer. I have to sign a paper kind of like application and as to what and how I want to volunteer. Anyone interested I was told you look for your local organ donor organization in your state. I have to have some purpose now. I can't work but this seems just right in order to get back into the world again after 2 years. Was fun. gayle trans/6-99 ^oo^ galye@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 In a message dated 8/6/01 11:09:56 PM Pacific Daylight Time, galye@... writes: I can't work but this seems just right in order to get back into the world again after 2 years Good going! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Sorry about the repeats AOL is screwing up royally tonight. Doesn't want to send anything out and is not telling me it has sent the letters. gayle trans/6-99 ^oo^ galye@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 Kay, I found it at my healthfood store and my email had an email address of a cherryjuice manufacturer... you can buy it by the quart...you only take 2 tbs a day. good luck, Beth Re: [ ] Digest Number 1716 > Beth, interesting article. Where do you buy tart cherry juice concentrate? > > Gayle, I am impressed with your Donor Alliance volunteering. I am going to > try to find something like that here in Texas. > > KayK in Austin, AIH 1995/PBC 1999 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 In a message dated 5/15/03 5:19:42 PM Central Daylight Time, writes: > > > Our IEP forms don't have an agreement page, just an attendance page. > > How do your IEPs ever get implemented then? The IEP should not be > implemented until everyone has agreed to it and signed that they agree. > Janis > > > Our IEPs also don't have an agreement page. An IEP can be implemented without a parent signing in agreement. The idea is that the " team " decides things. A parent can't prevent an IEP from being implemented by not signing. They must follow the " procedures " if they disagree. Our state is in agreement with our school district on this one. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2003 Report Share Posted May 19, 2003 In a message dated 5/16/2003 12:03:04 PM Eastern Daylight Time, Kvanryzin@... writes: > An IEP can be implemented without > a parent signing in agreement. The idea is that the " team " decides things. > A > parent can't prevent an IEP from being implemented by not signing. Karyn, What state are you in. I want to read your procedural safeguards. IDEA has parental consent, it's a federal law. Schools must make every effort to obtain parental consent. Cheryl in VA People with disabilities are here today to remind us that equal justice under the law is not a privilege but a fundamental birthright in America. Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Senator Ted Kennedy, during the Senate's passage of ADA-July 13, 1990 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2003 Report Share Posted May 19, 2003 In a message dated 5/19/03 3:16:47 AM Pacific Daylight Time, wildwards@... writes: > In a message dated 5/16/2003 12:03:04 PM Eastern Daylight Time, > Kvanryzin@... writes: > > >An IEP can be implemented without > >a parent signing in agreement. The idea is that the " team " decides things. > > >A > >parent can't prevent an IEP from being implemented by not signing. > > Karyn, > What state are you in. I want to read your procedural safeguards. IDEA > has parental consent, it's a federal law. Schools must make every effort > to > obtain parental consent. > Here in CA, if you don't sign then you get a " stay put " and the school district has to initiate mediation or take you to DP. In MD, when we were there, things generally worked the other way. After so may days the school did what THEY wanted and the parents had to go initiate DP for the " stay put " to go into effect (until the DP determination) - Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 In a message dated 1/3/05 10:00:33 PM Eastern Standard Time, writes: > Subject: Supplements causing seizure > > Hi Dee, > Sorry to hear magnesium did not work for , but resulted in more > seizures. You must bear in mind that all of these nutritional supplements > are > artificial formulations of some extract identified by scientists as the > " active > ingredient " responsible for the positive benefit associated with some food. > They > work for some if our digestion and assimilation are functioning efficiently > > and the extract is " correctly " designated and isolated as the active > ingredient. A bunch of assumptions. 's digestive system may be looking > for a better > source of these nutrients. Magnesium is present in dark leafy green > vegetables. How is his diet.Try a salad using kale, collards and spinach. > if > necessary perhaps these can be juiced, Green juices are bitter so you should > mix > with carrot juice.How old is ? > arnold > .. .. >>> Another way to increase Magnesium is with Epsom salt (MgSO4) baths. There is also a topical Mg cream. Is the the Mg or the chelate or the binders that cause the increase in seizures? We primarily use Milk of Magnesia which is Mg chelated to hydrogen and oxygen. Many swear by Mg gluconate or Mg glycinate or Mg taurate..... but there you are adding yet another component. I would start very slowly and also check the blood levels of Mg (just look at a recent lab report). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 In a message dated 1/3/05 10:00:33 PM Eastern Standard Time, writes: > What Arnold is saying here is so true. I know of Gordon Pomares from > hearing of Barb's experience and two other parents. But I have had > the rough lesson of having spent well over $50,000 in the last two > years on sure cures that people have " shared " with me over the last > few years. Now, do I think every one of these people tried to talk me > into something that would waste my money? No. I think evreyone has > seizures for different reasons...and like Elise was saying the other > day what works to help one person may be counter productive in > another. I would like to think that Gordon Pomares therapy would be > helpful to alll of our children (and adults as well) and I have a > feeling that it could be. At this time I will not pursue it as my son > son is seizure free without meds and I just can not afford to do it > now...but don't be too hard on the other parents that sound negative. > Many of us have had our hopes built up and dashed one too many times. > > > .. .. What I've chosen not to do is run a list of expenses, but I've been at this " stop the stupid seizures so my kid can have a life " for thirty fours years....... that just makes me tenacious, not to mention only marginally solvent. It is wonderful that your family has the financial means to make that kind of invest in your child's care over a short period. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 In a message dated 1/3/05 10:00:33 PM Eastern Standard Time, writes: > Date: Mon, 3 Jan 2005 10:37:58 -0800 (PST) > From: Grace <foxyfoxgrace@...> > Subject: Re: > > , > > A lot of companies and people as well take advantage of the fact that many > of us parents are willing to do or try just about anything if there's any hope > that our children will become seizure free even if what they offer is bogus, > but they know that we are desperate and so after so many times of being > taken advantage of and no cure, we become negative about everything specially if > it sounds too good to be true. > > , I am so happy that your son is doing so well. Dr. Kossoff never > got back to me, but my question to you is, how long is your study and are you > taking notes to share with us once your son is seizure free for ever. How are > you managing the diet, is it easy enough? I would love to try on > it. Do they follow the same diet as in Dr. Atkins' book or is it different? > Can a regular nutritionist follow the same plan as Dr. Kossoff's to help other > children. Thanks for your help! > > Grace > .. ..>>>> Grace No one has ever told me that they or their product can 'cure' the seizures. And, I choose to stay away from MLM products simply because their prices are way inflated. The pharmaceuticals are very costly and do not 'cure' Charlie of seizures. Does that make them bogus and the drug companies charlatans, too? I look at Charlie's seizures as a SYMPTOM not a disease. The seizure triggers, to me, are the keys that point the way to the underlying problem that needs correction. I put Charlie on my version of a cross between the keotgenic diet and the Atkins diet two or three years ago. Basically, it is high lean protein, high healthy brain fats, low carb, low sodium, no processed or prepared foods. THe results is a 70 pounds weigh drop (xs weight due primarily to Depakote) and seizure free for a year (on meds) while during that year he avoided seizing when exposed to ALL of his major seizure triggers, had two difficult surgical procedures, many extra drugs and etc. Now, he is on one less AED and as long as he gets his Mg and trace minerals plus other stuff, he appears to be neurologically stable. mjh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2005 Report Share Posted January 4, 2005 One other thought is if there is an intestinal bug that puts out a by-product called Tricarballylate, you could get this reaction. Tricarb binds quite tenaciously to magnesium so could conceivably cause this reaction. Mark Supplements causing seizure > > Hi Dee, > Sorry to hear magnesium did not work for , but resulted in more > seizures. You must bear in mind that all of these nutritional supplements > are > artificial formulations of some extract identified by scientists as the > " active > ingredient " responsible for the positive benefit associated with some food. > They > work for some if our digestion and assimilation are functioning efficiently > > and the extract is " correctly " designated and isolated as the active > ingredient. A bunch of assumptions. 's digestive system may be looking > for a better > source of these nutrients. Magnesium is present in dark leafy green > vegetables. How is his diet.Try a salad using kale, collards and spinach. > if > necessary perhaps these can be juiced, Green juices are bitter so you should > mix > with carrot juice.How old is ? > arnold > .. .. >>> Another way to increase Magnesium is with Epsom salt (MgSO4) baths. There is also a topical Mg cream. Is the the Mg or the chelate or the binders that cause the increase in seizures? We primarily use Milk of Magnesia which is Mg chelated to hydrogen and oxygen. Many swear by Mg gluconate or Mg glycinate or Mg taurate..... but there you are adding yet another component. I would start very slowly and also check the blood levels of Mg (just look at a recent lab report). Quote Link to comment Share on other sites More sharing options...
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