Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Thanks for letting me know. but I don't think I asked you about medic alert. di (: > diana > > its a good idea to have a bracelet that says " medic alert please call this > number for more information about my health " . so if anything happens to you, > like you get in a car accident or become unconscious and then paramedics are > trying to help you, and they dont know you have a ci in your head. and when > they take you to emergency room , you dont wnat them giving you an MRI of > your head with your ci. > > so if you wear a bracelet that says, i have a cochlear implant, please call > medic alert, then the paramedics or doctors can call that number and find out > you have a ci, and that your magnet needs to be removed if you need an MRi > for your head. > > lot of people who have illnesses like diabetes wear these ID braceletes from > medic alert. so that they can get the right kind of help and not help that > is wrong or inappropriate form someone who has diabetes. > > hope this helps. > > joni > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Misunderstanding here, sorry. There's another here. She was the one who asked. But I dont think she used her nickname " di " Oh by the way..I'm di!!! Short for diana (: But wanna thanks Joni for helping out by answering the question you thought I asked. > di > > right you did not ask me directly ... > > .... but you did ask on the forum about medic alert. i thought i was being > helpful. > i also thought it would help other people also looking for information. that > s what ci hear is for... many people , not just you. > > anytime you ask a question on forum, its great because several people can > give responses and the more help and info, the better > > if you only want to ask one only that one person its not a bad idea to send > private email. > > cheers > joni > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Hi Di, Those were some good comments regarding recognition. I know your surgery date is approaching pretty fast. Aren't you less than a month away from getting your CI? You must be getting very excited and probably nervous too. Did you get your activation day yet? Many centers give you that before the surgery. I'm going to be waiting to hear what you think of having a CI after you have experienced it for yourself. Alice Anything that is yours or anything you use it daily/often, you would know where is the program/buttons/settings located at. di chang Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 Thanks to , Rich, , , and anyone else who responded about diabetes insipidus. I guess I am hearing that the testing can be awful and the treatments not so great either (getting your blood drawn weekly). So, I am wondering, are there any major health risks involved in this disease? I am thinking that I have been this way my whole life, I have learned to live with it, is there any major reason to persue testing and treatment? Thanks, Dawn Search on the go: Try Windows Live Search for Mobile beta http://www1.imagine-msn.com/minisites/mobile/Default.aspx?locale=en-us Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 Hi, Dawn. One important issue is how serious a case you have, because there is a wide range. Some people literally pee gallons of water each day. I heard from one PWC recently who will go into shock and would actually die unless she continues to get IV saline regularly as well as drinking a whole lot of fluids. Others have a fairly mild case that is more of a nuisance than anything else. Well, there is the inconvenience aspect, and then there are some more important aspects. Under inconvenience, there's feeling thirsty all the time, having to have water available and drink all the time, having to go to the bathroom over and over, and having your sleep interrupted frequently to do it. Then there are the other ones: Your total blood volume will always be less than normal, and this lowers the venous return to your heart, which lowers your cardiac output. This can produce POTS or orthostatic hypotension or both. It also means that your skin will not get a lot of blood flow, so it will tend to be dry and flaky. Also, you won't be able to regulate your body temperature very well, and your thyroid will turn down your metabolic rate, so you will tend to feel cold a lot of the time. I guess what you do really depends on how serious your diabetes insipidus is. Of course, my goal is to fix it at the root, and as has reported, it looks as though building up the glutathione may do that, at least in his case, and hopefully in many others. Rich > > Thanks to , Rich, , , and anyone else who responded about diabetes insipidus. I guess I am hearing that the testing can be awful and the treatments not so great either (getting your blood drawn weekly). So, I am wondering, are there any major health risks involved in this disease? I am thinking that I have been this way my whole life, I have learned to live with it, is there any major reason to persue testing and treatment? > > Thanks, > Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Hi Dawn, I was pretty miserable with my DI. Being treated helped with pain, it helped the serious dehydration. When I woke in the morning before treatment for DI, my brain felt scalding pain, body felt like the tin man - until I drank a quart of tea or water when I woke. The DDAVP improved blood volume. When I stopped using the DDAVP, I found that my DI had improve by 50%. Although I was supposed to be tested weekly, I didn't do it. But I did it enough to know how to stay out of trouble, except for one time. The trouble you can get into is that your blood can become over diluted with water and your sodium numbers can go down. I almost died from that. My doc said I was within hrs of death and I thought I had the flu. If you really need it, I think treatment is worth it. It allowed me to be on my feet much more and I lost that panic feeling of not having water with me. L On Mar 16, 2006, at 11:17 PM, Dawn Munn wrote: > Thanks to , Rich, , , and anyone else who responded > about diabetes insipidus. I guess I am hearing that the testing can > be awful and the treatments not so great either (getting your blood > drawn weekly). So, I am wondering, are there any major health risks > involved in this disease? I am thinking that I have been this way my > whole life, I have learned to live with it, is there any major reason > to persue testing and treatment? > > Thanks, > Dawn > > > > Search on the go: Try Windows Live Search for Mobile beta > http://www1.imagine-msn.com/minisites/mobile/Default.aspx?locale=en-us > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Hi Rich, Thanks for this information. It is very helpful. I have a question for you regarding glutathione. It seems from all of the posts that I have been reading that it is doing amazing things for lots of people. This has me very interested in it. One of my main concerns is that I think everyone has said it is a whey supplement. I know there has been talk of other possible supplements that might be dairy free, but it doesn't seem like anyone has an opinion about those. Since this is an area you seem to be an expert in, I was hoping you could help me out. Also, I know this has been discussed before, but I am having a hard time grasping it. I would really appreciate it if you would be willing to explain to me what glutathione is and why it is helping. (As has been said here before, you can take something that is very difficult to understand and make it graspable). Again, thank you so much, Dawn > Hi, Dawn.> > One important issue is how serious a case you have, because there is > a wide range. Some people literally pee gallons of water each day. > I heard from one PWC recently who will go into shock and would > actually die unless she continues to get IV saline regularly as well > as drinking a whole lot of fluids. Others have a fairly mild case > that is more of a nuisance than anything else.> > Well, there is the inconvenience aspect, and then there are some > more important aspects.> > Under inconvenience, there's feeling thirsty all the time, having to > have water available and drink all the time, having to go to the > bathroom over and over, and having your sleep interrupted frequently > to do it.> > Then there are the other ones: Your total blood volume will always > be less than normal, and this lowers the venous return to your > heart, which lowers your cardiac output. This can produce POTS or > orthostatic hypotension or both. It also means that your skin will > not get a lot of blood flow, so it will tend to be dry and flaky. > Also, you won't be able to regulate your body temperature very well, > and your thyroid will turn down your metabolic rate, so you will > tend to feel cold a lot of the time.> > I guess what you do really depends on how serious your diabetes > insipidus is.> > Of course, my goal is to fix it at the root, and as has > reported, it looks as though building up the glutathione may do > that, at least in his case, and hopefully in many others.> > Rich Because e-mail on your cell phone should be easy: Try Windows Live Mail for Mobile beta http://www2.imagine-msn.com/minisites/mail/Default.aspx?locale=en-us Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Hi, Dawn. Glutathione is like a very small protein. It is normally found in every cell in the body. It does a lot of very important things, including prevent oxidative stress, take out toxic substances, and help the immune system. The things that glutathione normally does are the things that do not appear to be getting done in the bodies of many PWCs. If glutathione can be restored to normal levels, I think the body will be able to do these things again, and the person will become healthy. That's it in a nutshell. If you want to know more about glutathione, I suggest that you consult my 2004 AACFS poster paper, which can be found at this url: http://www.cfsresearch.org/cfs/research/treatment/15.htm Concerning how to build up glutathione if it is low, I have recently updated my writeup on that, and I will post it in a separate message. I have become convinced in recent months that many PWCs will have to compensate for genetic variations higher up in the sulfur metabolism before they will be able to raise their glutathione. That's why I am emphasizing use of the DAN! and Amy Yasko treatments that are used in autism. The autistic kids appear to have the same genetic problems, and their glutathione is depleted, also. I think it's a good idea to first get tested to see if your glutathione is low. The least expensive test I know of is the red blood cell glutathione test offered by http://www.immuno-sci-lab.com Hope this helps. Rich > > Hi Rich, > Thanks for this information. It is very helpful. I have a question for you regarding glutathione. It seems from all of the posts that I have been reading that it is doing amazing things for lots of people. This has me very interested in it. One of my main concerns is that I think everyone has said it is a whey supplement. I know there has been talk of other possible supplements that might be dairy free, but it doesn't seem like anyone has an opinion about those. Since this is an area you seem to be an expert in, I was hoping you could help me out. > > Also, I know this has been discussed before, but I am having a hard time grasping it. I would really appreciate it if you would be willing to explain to me what glutathione is and why it is helping. (As has been said here before, you can take something that is very difficult to understand and make it graspable). > > Again, thank you so much, > Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Hi Rich, Me again! I really appreciate your explanation. It makes sense now!! I have another question though. I went to immuno science lab website and I was a little confused. There are several glutathione tests available. Also, how do I order the test? Is it something I need my doctor to do? I tried, but I really couldn't find that information on the website. Thanks again! -Dawn Hi, Dawn.> > Glutathione is like a very small protein. It is normally found in > every cell in the body. It does a lot of very important things, > including prevent oxidative stress, take out toxic substances, and > help the immune system. The things that glutathione normally does > are the things that do not appear to be getting done in the bodies > of many PWCs. If glutathione can be restored to normal levels, I > think the body will be able to do these things again, and the person > will become healthy. That's it in a nutshell. If you want to know > more about glutathione, I suggest that you consult my 2004 AACFS > poster paper, which can be found at this url:> > http://www.cfsresearch.org/cfs/research/treatment/15.htm> > Concerning how to build up glutathione if it is low, I have recently > updated my writeup on that, and I will post it in a separate > message. I have become convinced in recent months that many PWCs > will have to compensate for genetic variations higher up in the > sulfur metabolism before they will be able to raise their > glutathione. That's why I am emphasizing use of the DAN! and Amy > Yasko treatments that are used in autism. The autistic kids appear > to have the same genetic problems, and their glutathione is > depleted, also.> > I think it's a good idea to first get tested to see if your > glutathione is low. The least expensive test I know of is the red > blood cell glutathione test offered by http://www.immuno-sci-lab.com> > Hope this helps.> > Rich It's the future, it's here, and it's free: Windows Live Mail beta http://www2.imagine-msn.com/minisites/mail/Default.aspx?locale=en-us Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Hi, Dawn. It's best to phone them. Ask for the red blood cell total glutathione test. They may have a kit to send, or they may just give instructions about what kind of a tube to draw the blood into. And yes, you do need a doctor's signature to get the test done. Rich > > Hi Rich, > > Me again! I really appreciate your explanation. It makes sense now!! I have another question though. I went to immuno science lab website and I was a little confused. There are several glutathione tests available. Also, how do I order the test? Is it something I need my doctor to do? I tried, but I really couldn't find that information on the website. Thanks again! > > -Dawn > > > Hi, Dawn.> > Glutathione is like a very small protein. It is normally found in > every cell in the body. It does a lot of very important things, > including prevent oxidative stress, take out toxic substances, and > help the immune system. The things that glutathione normally does > are the things that do not appear to be getting done in the bodies > of many PWCs. If glutathione can be restored to normal levels, I > think the body will be able to do these things again, and the person > will become healthy. That's it in a nutshell. If you want to know > more about glutathione, I suggest that you consult my 2004 AACFS > poster paper, which can be found at this url:> > http://www.cfsresearch.org/cfs/research/treatment/15.htm> > Concerning how to build up glutathione if it is low, I have recently > updated my writeup on that, and I will post it in a separate > message. I have become convinced in recent months that many PWCs > will have to compensate for genetic variations higher up in the > sulfur metabolism before they will be able to raise their > glutathione. That's why I am emphasizing use of the DAN! and Amy > Yasko treatments that are used in autism. The autistic kids appear > to have the same genetic problems, and their glutathione is > depleted, also.> > I think it's a good idea to first get tested to see if your > glutathione is low. The least expensive test I know of is the red > blood cell glutathione test offered by http://www.immuno-sci-lab.com> > Hope this helps.> > Rich > > > > It's the future, it's here, and it's free: Windows Live Mail beta > http://www2.imagine-msn.com/minisites/mail/Default.aspx?locale=en- us > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Dawn I got the RBC (red blood cell) test. Yes, you will need a Dr or Naturepath or some sort of med professional to draw the blood and send it to their lab. It cost me 85.00. Marcia RE: Re: DI Hi Rich, Me again! I really appreciate your explanation. It makes sense now!! I have another question though. I went to immuno science lab website and I was a little confused. There are several glutathione tests available. Also, how do I order the test? Is it something I need my doctor to do? I tried, but I really couldn't find that information on the website. Thanks again! -Dawn Hi, Dawn.> > Glutathione is like a very small protein. It is normally found in > every cell in the body. It does a lot of very important things, > including prevent oxidative stress, take out toxic substances, and > help the immune system. The things that glutathione normally does > are the things that do not appear to be getting done in the bodies > of many PWCs. If glutathione can be restored to normal levels, I > think the body will be able to do these things again, and the person > will become healthy. That's it in a nutshell. If you want to know > more about glutathione, I suggest that you consult my 2004 AACFS > poster paper, which can be found at this url:> > http://www.cfsresearch.org/cfs/research/treatment/15.htm> > Concerning how to build up glutathione if it is low, I have recently > updated my writeup on that, and I will post it in a separate > message. I have become convinced in recent months that many PWCs > will have to compensate for genetic variations higher up in the > sulfur metabolism before they will be able to raise their > glutathione. That's why I am emphasizing use of the DAN! and Amy > Yasko treatments that are used in autism. The autistic kids appear > to have the same genetic problems, and their glutathione is > depleted, also.> > I think it's a good idea to first get tested to see if your > glutathione is low. The least expensive test I know of is the red > blood cell glutathione test offered by http://www.immuno-sci-lab.com> > Hope this helps.> > Rich It's the future, it's here, and it's free: Windows Live Mail beta http://www2.imagine-msn.com/minisites/mail/Default.aspx?locale=en-us Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 they will likely need to get the tube/kit from them directly, they used a yellow top tube which was uncommon. Marcia Re: DI Hi, Dawn. It's best to phone them. Ask for the red blood cell total glutathione test. They may have a kit to send, or they may just give instructions about what kind of a tube to draw the blood into. And yes, you do need a doctor's signature to get the test done. Rich > > Hi Rich, > > Me again! I really appreciate your explanation. It makes sense now!! I have another question though. I went to immuno science lab website and I was a little confused. There are several glutathione tests available. Also, how do I order the test? Is it something I need my doctor to do? I tried, but I really couldn't find that information on the website. Thanks again! > > -Dawn > > > Hi, Dawn.> > Glutathione is like a very small protein. It is normally found in > every cell in the body. It does a lot of very important things, > including prevent oxidative stress, take out toxic substances, and > help the immune system. The things that glutathione normally does > are the things that do not appear to be getting done in the bodies > of many PWCs. If glutathione can be restored to normal levels, I > think the body will be able to do these things again, and the person > will become healthy. That's it in a nutshell. If you want to know > more about glutathione, I suggest that you consult my 2004 AACFS > poster paper, which can be found at this url:> > http://www.cfsresearch.org/cfs/research/treatment/15.htm> > Concerning how to build up glutathione if it is low, I have recently > updated my writeup on that, and I will post it in a separate > message. I have become convinced in recent months that many PWCs > will have to compensate for genetic variations higher up in the > sulfur metabolism before they will be able to raise their > glutathione. That's why I am emphasizing use of the DAN! and Amy > Yasko treatments that are used in autism. The autistic kids appear > to have the same genetic problems, and their glutathione is > depleted, also.> > I think it's a good idea to first get tested to see if your > glutathione is low. The least expensive test I know of is the red > blood cell glutathione test offered by http://www.immuno-sci-lab.com> > Hope this helps.> > Rich > > > > It's the future, it's here, and it's free: Windows Live Mail beta > http://www2.imagine-msn.com/minisites/mail/Default.aspx?locale=en- us > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Hi Dawn, I am in the middle of trying to get an Immunosciences glutathione RBC test done. My doctor uses Lab Corp only. I called the Lab Corp nearest to my house to confirm that they would do a blood draw for Immunosciences. (not all Lab Corp's will) Lab Corp gave me their fax number, and I called my doctor to get her to fax a requisition to Lab Corp. After Lab Corp does the blood draw, they will give me the test tube, and I must take it to a Fed Ex office myself to mail it. I called Immunosciences. For some reason, the glutathione RBC is not listed on the website, but they confirmed that they do it. They said to tell Lab Corp to use a yellow top tube, and said I should include $75 in the shipment package. I am going to print off any other instructions I find on the Immunosciences website to take with me when I get the blood drawn. I am so relieved to have everything lined up. I was worried about how I was going to coordinate everything. I hope it's simpler for you. Vickie > > Dawn > > I got the RBC (red blood cell) test. Yes, you will need a Dr or Naturepath or some sort of med professional to draw the blood and send it to their lab. It cost me 85.00. > > Marcia > RE: Re: DI > > > Hi Rich, > > Me again! I really appreciate your explanation. It makes sense now!! I have another question though. I went to immuno science lab website and I was a little confused. There are several glutathione tests available. Also, how do I order the test? Is it something I need my doctor to do? I tried, but I really couldn't find that information on the website. Thanks again! > > -Dawn > > > Hi, Dawn.> > Glutathione is like a very small protein. It is normally found in > every cell in the body. It does a lot of very important things, > including prevent oxidative stress, take out toxic substances, and > help the immune system. The things that glutathione normally does > are the things that do not appear to be getting done in the bodies > of many PWCs. If glutathione can be restored to normal levels, I > think the body will be able to do these things again, and the person > will become healthy. That's it in a nutshell. If you want to know > more about glutathione, I suggest that you consult my 2004 AACFS > poster paper, which can be found at this url:> > http://www.cfsresearch.org/cfs/research/treatment/15.htm> > Concerning how to build up glutathione if it is low, I have recently > updated my writeup on that, and I will post it in a separate > message. I have become convinced in recent months that many PWCs > will have to compensate for genetic variations higher up in the > sulfur metabolism before they will be able to raise their > glutathione. That's why I am emphasizing use of the DAN! and Amy > Yasko treatments that are used in autism. The autistic kids appear > to have the same genetic problems, and their glutathione is > depleted, also.> > I think it's a good idea to first get tested to see if your > glutathione is low. The least expensive test I know of is the red > blood cell glutathione test offered by http://www.immuno- sci-lab.com> > Hope this helps.> > Rich > > > > It's the future, it's here, and it's free: Windows Live Mail beta > http://www2.imagine-msn.com/minisites/mail/Default.aspx?locale=en- us > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Hi Vickie, I really appreciate you helping me out. You answered all of my questions. Thanks, Dawn > Hi Dawn, I am in the middle of trying to get an Immunosciences > glutathione RBC test done. My doctor uses Lab Corp only. I called the > Lab Corp nearest to my house to confirm that they would do a blood > draw for Immunosciences. (not all Lab Corp's will) Lab Corp gave me > their fax number, and I called my doctor to get her to fax a > requisition to Lab Corp. After Lab Corp does the blood draw, they > will give me the test tube, and I must take it to a Fed Ex office > myself to mail it. > > I called Immunosciences. For some reason, the glutathione RBC is not > listed on the website, but they confirmed that they do it. They said > to tell Lab Corp to use a yellow top tube, and said I should include > $75 in the shipment package. I am going to print off any other > instructions I find on the Immunosciences website to take with me > when I get the blood drawn. > > I am so relieved to have everything lined up. I was worried about how > I was going to coordinate everything. I hope it's simpler for you.> > Vickie It's the future, it's here, and it's free: Windows Live Mail beta http://www2.imagine-msn.com/minisites/mail/Default.aspx?locale=en-us Quote Link to comment Share on other sites More sharing options...
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