Guest guest Posted September 14, 1999 Report Share Posted September 14, 1999 > Date: Mon, 13 Sep 1999 10:35:55 -0500 > From: " , T. " <S@...> >Subject: RE: Digest Number 356 > >is lack of blood volume a cause of CFS or a consequence of restricted >ability and lack of exercise? or is that a million dollar question?? > >Steve Steve, That's the million dollar question....! At least for some of the researchers! Some CFS people do well on florinif because it increases blood volume.....but that isn't the answer for everyone, and it is a treatment, not a cure. But people with reduced blood volume usually feel better for a few days after saline IV therapy. Have you been tested for orthostatic intolerance? Probably the problems are hand in hand CFS causes the low blood volume in some people and that problem only makes things worse because then the brain functions even more poorly. By boosting the blood volume somehow people do improve somewhat but they can't maintain it. best, E Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 1999 Report Share Posted September 14, 1999 Please remove me from this list since you will not respond to any of my postings. Shari Dodd dodd@... Digest Number 358 > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 1999 Report Share Posted September 14, 1999 Shari, On what topics were your questions? Perhaps no one had any information on them? If I have any information on any of the topics, I am glad to share what I know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 1999 Report Share Posted September 14, 1999 Dear Shari! Please don't go! I have not seen posts from you! Please contact me if problem persists! Christie PS. found a interferon doc for me! At 08:15 PM 9/14/99 -0400, you wrote: >From: shari dodd <dodd@...> > >Please remove me from this list since you will not respond to any of my >postings. > > >Shari Dodd >dodd@... > Digest Number 358 > > >> >>--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 1999 Report Share Posted September 15, 1999 Hi Christie, In MI? If so, can you let me know who? Thanks! Jerry Re: Digest Number 358 > From: " C.Tab. " <tab@...> > > Dear Shari! > > Please don't go! I have not seen posts from you! Please contact me if > problem persists! > > Christie > > PS. found a interferon doc for me! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 1999 Report Share Posted September 16, 1999 Hi, I called Amarillo Biosciences and talked to CEO, Dr. Joe Cunnins who referred me to Dr. Ship at U of MI. They have published research together, and are very open-minded. I was unable to find doc on my own who would consider this treatment. Are you the same Jerry who I have corresponded with recently about CFIDS advocacy? I have search my mailboxes and cannot find the addy! Take care, CHristie At 10:24 PM 9/15/99 -0400, you wrote: >From: " Jerry " <jegrey@...> > >Hi Christie, > >In MI? If so, can you let me know who? Thanks! > >Jerry > > Re: Digest Number 358 > > >> From: " C.Tab. " <tab@...> >> >> Dear Shari! >> >> Please don't go! I have not seen posts from you! Please contact me if >> problem persists! >> >> Christie >> >> PS. found a interferon doc for me! >> > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 1999 Report Share Posted September 17, 1999 Hi Christie, We had corresponded personally. I'm the one who gave you the lawyers name and a list of Drs. Thanks for Dr. Ship's name. Jerry Re: Digest Number 358 > From: " C.Tab. " <tab@...> > > > Hi, > > I called Amarillo Biosciences and talked to CEO, Dr. Joe Cunnins who > referred me to Dr. Ship at U of MI. They have published research together, > and are very open-minded. I was unable to find doc on my own who would > consider this treatment. > > Are you the same Jerry who I have corresponded with recently about CFIDS > advocacy? I have search my mailboxes and cannot find the addy! > > Take care, > > CHristie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 1999 Report Share Posted October 6, 1999 Hey everyone. My name is Alina and I am almost 18 (on Nov. 4!). My little sister, Shaina will be 16 in a couple of weeks also. She has 3 different autoimmune liver/colon diseases. She is about to start taking cyclosporine (sorry about the spelling) which I hear is a very strong drug. I would like to share this story with you that I wrote about her. Also, if you have any information on this drug, or if you live in the Charlotte, NC region and would like to tell me your transplant story for a school-related project, please e-mail me. Thanks and best of luck and health to you all and your families! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ She was 15 years old. Every day felt like a century. An hour was like staying up all night on 1 cup of coffee. She walks down the halls, hoping the day will end soon, but it never does. There's this feeling she gets sometimes, like she is alone in this world. Alienated from her friends, her family, and even her very own body. All of those doctors, with big words and funny names, what was the point of telling them about the pain? It won't make it go away... not even the doctors could make it go away. How did she live with a sickness that no one could heal, a sickness that no one understood, a sickness that you couldn't blame on anything? It just happened. And it just happened to happen to her. And she goes home and goes straight to bed, past her mother in the kitchen. The mother who gave birth 15 years ago to a healthy baby, the mother who doesn't know how to help, the mother who told the doctor: " We will pay anything, cost is not an issue. " But not even money could make this pain go away. Why is it that the mother must always feel responsible, for something that no one could control? It's people like that girl that you read about in health class. You hear about them in the newspaper, in biology class, on the news... when it's already too late. but you never know how " normal " they are. You wonder where she will be in 15 years, probably with a transplant, probably still in pain. You wonder how things like this will affect a person, how they will turn out. You can cry for them or hold out your hand. You could force them to speak or let them remain quiet, but it's these questions you will never get to answer. And after you've looked through her eyes- from the hospital bed to the school hallway- you will see. You will see the world much simpler now, as a place where we must survive. A place where we must make the best of everything we will ever have, because we will never know when everything will be taken away, forever. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 1999 Report Share Posted October 6, 1999 Dear Alina: Thanks for sharing you story with us. It must be so hard for your sister having to go through this at such a young age. At least she has the love and support of you and your family. Love and understanding go a long way when dealing with any illness. As for the cyclosporine, I recently tried it and was unable to take it at the dosages they wanted me to take, but there are several in the group who have had very good success with it. I hope that your sister does well on it. Good luck to your sister and to you. Keep us posted about her progress. Take care and God Bless! Kathy (AIH) Seattle area Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 Dear Alina, Your story is incredible! It pulled my heart strings! You clearly expressed what, I think, so many loved ones and those suffering these diseases feel.. Thank you for sharing it. I'm keeping it on file..I hope you don't mind! Your sister is fortunate to have you, because you're sincerely trying to see things from her perspective. This must be tough on you. I hope you find some answers, and comfort, here. >From: AlinaJo114@... >Reply- onelist > onelist >Subject: Re: [ ] Digest Number 358 >Date: Wed, 6 Oct 1999 22:37:12 EDT > >Hey everyone. My name is Alina and I am almost 18 (on Nov. 4!). My >little sister, Shaina will be 16 in a couple of weeks also. She has 3 >different autoimmune liver/colon diseases. She is about to start taking >cyclosporine (sorry about the spelling) which I hear is a very strong drug. >I would like to share this story with you that I wrote about her. Also, if >you have any information on this drug, or if you live in the Charlotte, NC >region and would like to tell me your transplant story for a school-related >project, please e-mail me. Thanks and best of luck and health to you all >and >your families! >~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > She was 15 >years old. Every day felt like a century. An hour was like staying up all >night on 1 cup of coffee. She walks down the halls, hoping the day will >end >soon, but it never does. > There's this feeling she gets sometimes, like she is alone in this >world. >Alienated from her friends, her family, and even her very own body. All of >those doctors, with big words and funny names, what was the point of >telling >them about the pain? It won't make it go away... not even the doctors >could >make it go away. > How did she live with a sickness that no one could heal, a sickness >that >no one understood, a sickness that you couldn't blame on anything? It just >happened. And it just happened to happen to her. > And she goes home and goes straight to bed, past her mother in the >kitchen. The mother who gave birth 15 years ago to a healthy baby, the >mother who doesn't know how to help, the mother who told the doctor: " We >will pay anything, cost is not an issue. " But not even money could make >this >pain go away. Why is it that the mother must always feel responsible, for >something that no one could control? > It's people like that girl that you read about in health class. You >hear >about them in the newspaper, in biology class, on the news... when it's >already too late. but you never know how " normal " they are. > You wonder where she will be in 15 years, probably with a transplant, >probably still in pain. You wonder how things like this will affect a >person, how they will turn out. > You can cry for them or hold out your hand. You could force them to >speak or let them remain quiet, but it's these questions you will never get >to answer. > And after you've looked through her eyes- from the hospital bed to the >school hallway- you will see. You will see the world much simpler now, as >a >place where we must survive. A place where we must make the best of >everything we will ever have, because we will never know when everything >will >be taken away, forever. >~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > >------------------------------------------------------------------------ >Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 Alina, My name is Dayna and I am from Charlotte. I have Ulceratiive Colitis and Primary Sclerosing Cholangitis. Which diseases does your sister have? Your story was so sad- a real tear jerker. Please tell your sister that if she needs support and doesn't know where to turn, this is a good place for information, and support. I have felt better these last few weeks just knowing that there are others like me. I have only been on the website about 3 weeks. Tell your sister to hang in there, and I will be praying for her. Re: [ ] Digest Number 358 >From: AlinaJo114@... > >Hey everyone. My name is Alina and I am almost 18 (on Nov. 4!). My >little sister, Shaina will be 16 in a couple of weeks also. She has 3 >different autoimmune liver/colon diseases. She is about to start taking >cyclosporine (sorry about the spelling) which I hear is a very strong drug. >I would like to share this story with you that I wrote about her. Also, if >you have any information on this drug, or if you live in the Charlotte, NC >region and would like to tell me your transplant story for a school-related >project, please e-mail me. Thanks and best of luck and health to you all and >your families! >~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > She was 15 >years old. Every day felt like a century. An hour was like staying up all >night on 1 cup of coffee. She walks down the halls, hoping the day will end >soon, but it never does. > There's this feeling she gets sometimes, like she is alone in this world. >Alienated from her friends, her family, and even her very own body. All of >those doctors, with big words and funny names, what was the point of telling >them about the pain? It won't make it go away... not even the doctors could >make it go away. > How did she live with a sickness that no one could heal, a sickness that >no one understood, a sickness that you couldn't blame on anything? It just >happened. And it just happened to happen to her. > And she goes home and goes straight to bed, past her mother in the >kitchen. The mother who gave birth 15 years ago to a healthy baby, the >mother who doesn't know how to help, the mother who told the doctor: " We >will pay anything, cost is not an issue. " But not even money could make this >pain go away. Why is it that the mother must always feel responsible, for >something that no one could control? > It's people like that girl that you read about in health class. You hear >about them in the newspaper, in biology class, on the news... when it's >already too late. but you never know how " normal " they are. > You wonder where she will be in 15 years, probably with a transplant, >probably still in pain. You wonder how things like this will affect a >person, how they will turn out. > You can cry for them or hold out your hand. You could force them to >speak or let them remain quiet, but it's these questions you will never get >to answer. > And after you've looked through her eyes- from the hospital bed to the >school hallway- you will see. You will see the world much simpler now, as a >place where we must survive. A place where we must make the best of >everything we will ever have, because we will never know when everything will >be taken away, forever. >~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > >>Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 1999 Report Share Posted October 10, 1999 ---------- >Alina, Welcome, You are a special person. I take cyclosporin, 100mg in the morning and 100 at night. The side affects that have affected me so far are increased facial and body hair, and sun spots, but while this drug is keeping me alive, I figure I will put up with those. I hope your sister is progressing with her meds. I also suffer from constant pain, not everyone does apparently. I pace and do not get much sleep, I can sympathise with her plight. I will keep her (and you) in my prayers. Can't help at school though, I live in Australia. SueB. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 Jordan woke up this morning with his pupils REALLY dialated. I called the peditrician and the rhuematologist and when the rheumatologist had not called me back (I hate their phone system) - the pediatrician said she wanted to see us ASAP. His eyes were watering and really dialated and he appeared to be really light sensitive. She is now sending us to a pediatric opthamologist, Geez, this kid has more doctors now than I have had my whole life. Anyone else have this experience? By the way Jordan does wear glasses already - he says, the eyes hurt inside. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 In a message dated 2/11/00 4:12:23 PM Eastern Standard Time, Prov31Wise@... writes: << Jordan woke up this morning with his pupils REALLY dialated. I called the peditrician and the rhuematologist and when the rheumatologist had not called me back (I hate their phone system) - the pediatrician said she wanted to see us ASAP. His eyes were watering and really dialated and he appeared to be really light sensitive. She is now sending us to a pediatric opthamologist, Geez, this kid has more doctors now than I have had my whole life. Anyone else have this experience? By the way Jordan does wear glasses already - he says, the eyes hurt inside. >> Tally was terribly light sensitive at the beginning but now he seems to be better. He still complains about how bright the sun is but this is the south where I get headaches from squinting if I'm not careful..smile. kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2000 Report Share Posted February 13, 2000 Yes, I have noticed that Robbie's eyes have been dialated a lot over the last couple of months. His rheumatologist did not seem to think it was JRA or drug related. His pediatrician didn't think it was a big deal either. I would love to know what you find out. Thanks, Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2000 Report Share Posted June 2, 2000 In a message dated 6/2/00 4:22:42 AM Eastern Daylight Time, Multiples-DSegroups writes: << said - oh great then I can have 2 floppy ears - she thought there is something wrong with her " normal " ear! Kids - aren't they amazing?? >> How wonderful, Carolyn, what a wonderful little person she is! love debbi mom to Logan (6 soon) Eli (DS) and Milo (4 in sept) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2000 Report Share Posted July 15, 2000 WOW! Your Doctors actually call you guys back? I can't believe what I am hearing.....It sounds just to good to be true!! LOL!! Could they maybe call my Docs and tell them how to go about it? I would sure appreciate it!! LOL! Huggs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2000 Report Share Posted July 15, 2000 Hello Everyone, As I have stated a time before, the doctors I have now, here in Northeast Wisconsin, are great. When I have a question, I can call and they get back to me within that same day,usually within the hour. I have had many " quacks " , and I have found that through interviewing them right from the start and believing in my first impressions, I truely have found some real winners. They are all kind and considerate and even my GP will either call back, or his Medical Assistant will call. I guess all I can say is interview any health care professional , it's your life and all of you deserve the very best. Many Blessings, Michele (There are good doctors out there.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 Natasha, do you get enough calcium from your broccoli alone or do you take any supplements too? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 lescase@... wrote: > > Natasha, do you get enough calcium from your broccoli alone or do you take > any supplements too? > , I know you asked this question of Natasha, I wish I had my books available to quote from but if my memory serves me correctly then Broccoli has about the highest content of calcium in any natural product, I will do my best to get more info for you and the list. -- Steve - Cheltenham, UK --------- In love and light we are In darkness we are no less Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 lescase@... wrote: > > Natasha, do you get enough calcium from your broccoli alone or do you take > any supplements too? > , I know you asked this question of Natasha, I wish I had my books available to quote from but if my memory serves me correctly then Broccoli has about the highest content of calcium in any natural product, I will do my best to get more info for you and the list. -- Steve - Cheltenham, UK --------- In love and light we are In darkness we are no less Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 lescase@... wrote: > > Natasha, do you get enough calcium from your broccoli alone or do you take > any supplements too? > From this site: http://www.broccoli.com/institute/nutritionreport.htm " It is also believed that the best source of calcium is from dairy products. That is a big problem because a certain percentage of people are lactose intolerant. Lactose, a sugar in dairy products, is sometimes indigestible and causes stomach discomfort (i.e bloating, cramps, nausea, diarrhea). >>> Ounce for ounce, broccoli has as much calcium as milk, and provides many other health benefits as well. The RDA for calcium is 1200 mg for people 11 to 24 years old, pregnant women, and lactating women, and 800 mg for all other ages. " -- Steve - Cheltenham, UK --------- In love and light we are In darkness we are no less Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 lescase@... wrote: > > Natasha, do you get enough calcium from your broccoli alone or do you take > any supplements too? > From this site: http://www.broccoli.com/institute/nutritionreport.htm " It is also believed that the best source of calcium is from dairy products. That is a big problem because a certain percentage of people are lactose intolerant. Lactose, a sugar in dairy products, is sometimes indigestible and causes stomach discomfort (i.e bloating, cramps, nausea, diarrhea). >>> Ounce for ounce, broccoli has as much calcium as milk, and provides many other health benefits as well. The RDA for calcium is 1200 mg for people 11 to 24 years old, pregnant women, and lactating women, and 800 mg for all other ages. " -- Steve - Cheltenham, UK --------- In love and light we are In darkness we are no less Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2000 Report Share Posted August 26, 2000 > lescase@... wrote: > > > > Natasha, do you get enough calcium from your broccoli alone or do you take > > any supplements too? > > > > , > > I know you asked this question of Natasha, I wish I had my books > available to quote from but if my memory serves me correctly then > Broccoli has about the highest content of calcium in any natural > product, I will do my best to get more info for you and the list. > I just had my bone density done and the councelling that was included suggested sardines. They are the highest form of calcium out there. (if you can stomach them) Me - I'm sticking to broccoli! I am happy to report that my density is above average for a woman of my age. That is the first good news I've had , healthwise, for years! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2000 Report Share Posted August 28, 2000 Does it also contain magnesium > > Natasha, do you get enough calcium from your broccoli alone or do you >take > > any supplements too? > > >steve wrote. I know you asked this question of Natasha, I wish I had my >books >available to quote from but if my memory serves me correctly then >Broccoli has about the highest content of calcium in any natural >product, I will do my best to get more info for you and the list. _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
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