Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 Hi, not too long ago, there was talk of a break thru in CFS with, people with this testing positive for E koli(it was spelled with a K)can any one tell me how to get it. Also some times I,do think that I was exposed to something, I was in Incline Village the summer that the town fell ill, I was at the lake, and the beach was deserted, duh, I should of thought that was odd, well I got really ill, also I think the polio shot virus is also a link, they gave us something the was tainted, with a monkey frigging virus,How many of you, had mono first, Im curious. There is a movie with the actor Bill Paxton,called The Bright Shining Lie, it also has a theory about exposure. My boyfriend was in the Desert Storm, I was having a great remission for 4 nearly 5 years, then after a year with him I got really sick again, He used to brag about how it didn't wear his protective gear, he no longer brags about that, Have you noticed how the government is denying the vets any help, saying that the wind was blowing a different direction than where the vets were, They are being told that they are ill, but they didnt get ill from Desert Storm. These poor people have what we have, and are denied so much! Any ways these are just my thoughts, thanks __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 Hi i was 19 when i got mono. i saw a rheumotologist last week he said my number for the epstein barr virus is high and he tested for hhv6 is this the same as herpes simplex he said it came back positive and he said my white count is low is this normal for cfs? i work on the phone with a biochemist which he faxed blood work to him because he said he could not help with this condition i need a natural doc which i have been working with already. what i dont understand is why is everyone geeting this but the causes seem to be different and even autism so many kids gettig this to? --- Olson <caloson@...> wrote: > Hi, not too long ago, there was talk of a break > thru > in CFS with, people with this testing positive for > E > koli(it was spelled with a K)can any one tell me how > to get it. Also some times I,do think that I was > exposed to something, I was in Incline Village the > summer that the town fell ill, I was at the lake, > and > the beach was deserted, duh, I should of thought > that > was odd, well I got really ill, also I think the > polio > shot virus is also a link, they gave us something > the > was tainted, with a monkey frigging virus,How many > of > you, had mono first, Im curious. There is a movie > with > the actor Bill Paxton,called The Bright Shining Lie, > > it also has a theory about exposure. My boyfriend > was > in the Desert Storm, I was having a great remission > for 4 nearly 5 years, then after a year with him I > got > really sick again, He used to brag about how it > didn't > wear his protective gear, he no longer brags about > that, Have you noticed how the government is denying > the vets any help, saying that the wind was blowing > a > different direction than where the vets were, They > are > being told that they are ill, but they didnt get ill > from Desert Storm. These poor people have what we > have, and are denied so much! Any ways these are > just > my thoughts, > thanks > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2002 Report Share Posted April 29, 2002 << Message: 14 Date: Sun, 28 Apr 2002 18:03:24 -0000 From: " hrby97111 " <hrby97111@...> Subject: Re: Digest Number 2246 Amy, I think we're kindred spirits. I believe humor is essential, sometimes that is the only thing I can do to cope, you don't always want to cry. That liver doctor needs to loosen up, walk a mile in his patient's shoes, huh? Ruth >> Ruth, I'd also like to see him go through some of these procedures Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2002 Report Share Posted April 29, 2002 Amy, I am a 3rd grade retired teacher of less than 1 year. I too, understand the need for something to occupy the empty times. I have returned to sewing. This seems to help me and I have also decided to pick up the paint brush again. I have a small amount of talent in the area of acrylics. No Monet or anything like that. Just like to dab around on birdhouses, trays, and other inexpensive things. With the cost of this disease, AIH, I must be thirfty. Hope you are able to find something because I have experienced a little down time and have found that it makes me think too much. Good luck with your search. Jo Re: [ ] Digest Number 2247 To Bert RE: Life ChangesThanks for your support. I'm not sure I'll have the energy to go back to teaching and my other activities within the district but it has been awhile (Nov) since I've worked and I've been gradually "retiring" out of some of my other responsibilities such as chair for the bargaining team. I just keep adjusting but I need something to help fill the void that doesn't take as much energy. Any ideas out there?Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2002 Report Share Posted April 29, 2002 Oh Jo, I have a few tin cans that need decorating......can you come over?????? LOL....I think I am beginning to save up so I have things to do! It is important for me to learn to be thrifty now....I may not work next year. debby Re: [ ] Digest Number 2247 To Bert RE: Life ChangesThanks for your support. I'm not sure I'll have the energy to go back to teaching and my other activities within the district but it has been awhile (Nov) since I've worked and I've been gradually "retiring" out of some of my other responsibilities such as chair for the bargaining team. I just keep adjusting but I need something to help fill the void that doesn't take as much energy. Any ideas out there?Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2002 Report Share Posted April 29, 2002 Thanks Amy.....I appreciate your words. Yes, grief IS hard work! I am doing OK overall. Just tired. This week, for some reason, I am really missing her! Don't understand why it comes in waves, but it happens. I just try to keep focused on what needs to be done day by day and not go any faster than I can! Just 27 more days....or is it 26 1/2?? Just MUST get those days stuck firmly in my head! debby Re: Re: Life ChangesAmy, my GP doctor wants me to stop for a while, but I just can't. My mom died last month and I took an extra week off. Then just before she died, I took another week off because I was just too sick with the colds the children passed along. On the whole, I have been able to avoid the colds, etc. because I have been using essential oils in the room before and after school. That has kept the infection rate for me down. True, it IS hard to keep away from those little germs-especially when they sneeze right on you! YIKES..... >>Debbie, No wonder you are extra run down - grief is very exhausting. So sorry to hear about your mom. Try not to worry about next year yet until you've had a chance to recuperate after school is out but listening to your GP wouldn't hurt I know how you feel though, it's very hard to be gone. Take care of yourself. It sounds like you are getting support on the homefront.Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 I have informed Ashton that Kaitlyn may be there. Ashton has just turned 11. She would like to meet Kaitlyn. Hope to you there. L mom to Ashton 11 CVID, asthma, dyslexia & Marina 8 asthma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 In a message dated 10/4/2004 1:26:59 PM Eastern Daylight Time, writes: is anyone else using childrens hospital boston.... kathleen mom to conan Hi Kathleen, My name is Martha and my daughter is treated at Children's Hospital in Boston. If you would like to email me off newsgroup, I could discuss my daughter's experience there with you. Sincerely, Martha (mom to IgA deficiency, ? poor response polysaccharide coated antibody test, truncus arteriosus, pace maker, aortic heart valve. etc.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 In a message dated 10/4/2004 1:26:59 PM Eastern Daylight Time, writes: Here it is day three and she still has the side effects from her IVIG. Hi Janet, Dr. Bonilla of Children's Hospital Boston spoke about Subcutaneous Infusion of Immune Globulin in Worcester this past weekend. This was sponsored by the IDF. Do you think there is any chance that your doc would be willing to consider subQ? The primary reasons patients and Drs choose subQ over IVIG is lower side effects and easier access apparently. Seems like this would make Brittany a candidate. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 In a message dated 10/4/2004 7:11:34 PM Eastern Daylight Time, K979@... writes: The primary reasons patients and Drs choose subQ over IVIG is lower side effects and easier access apparently. Seems like this would make Brittany a candidate. Martha, I can talk to the doctor about it, but Brittany is skin and bones. I hear you have to have some body fat. Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
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