Guest guest Posted May 23, 2000 Report Share Posted May 23, 2000 Hi, All, At Robynn's suggestion, I'm enclosing an email that I sent her privately regarding my sister, for whom I have been writing. Although my sister has gone back out to northampton, I pass on all the information I get here to her. She feels like her symptoms havn't gotten better despite the antibiotics, and her fear is that they just aren't doing anything at all .... she's very scared, and very sick, and we know so little about this world we've just been immersed in ... we just want her to get better .... Hi, Robynn, I'm beth; I've only been on the list a few weeks, since my sister first started having difficulties getting proper treatment for her lyme. I'm not even sure if this is the right place to express my thoughts, but I'm concerned about my sister, and I'm not sure what else to do. I realize I signed on during a particularly difficult transition with the group, what with Marta feeling so terribly ill, but I feel like I must be doing something wrong. While the information I've gleaned through everyone's emails has been overwhelmingly helpful and useful and has significantly contributed to getting my sister into the right care, I've gotten very little personal response back. At first I thought it was because I was writing sort of in proxy for my sister, who is not very computer literate and lives out in northampton, about 2 plus hours from me. But this past weekend my sister was able to get out here and visit for the first time in months, and she wrote what I thought was a wonderful email, and not one person has responded to her, or her questions. I was dismayed. And she, poor thing, is taking it personally, despite what I tell her about how many people on the list are struggling with their own symptoms, and etc. What are we doing wrong??? She's scared to death she's never ever going to get better, the disease is wreaking havoc on her life, and, now, after I talked up a storm to her about how wonderful, encouraging, and supportive a group the lymies are, and after I encouraged her to write a personal message herself so that people could see who she is in her own voice, she didn't get one message back. I can't help but feel we're doing something wrong? I feel rather odd writing to you about it - I've never even used a list-serve before in my life, so I don't know how any of it works. I just thought if there were some advice you had to offer on how to do things differently, maybe you'd have it?? I'm a little desperate to make her feel better, get her questions answered, and console her fears; this is the only resource I have .... any thing you could offer would be much appreciated. thank you so much for taking the time - beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2000 Report Share Posted May 23, 2000 Hi Lizabeth I just read your e-mail to Robyn and feel bad about your sister. I don't get on the post alot since I haven't felt that great either I have been on several months of abx without any relief of symptoms. Recently my LLMD put me on Diflucan for a possible yeast overgrowth from the abx. How long has your sister been on abx? Is she seeing a LLMD? VERY IMPORTANT! You can e- mail me privately if you like Ill try to help as much as I can. Fran > Hi, All, > > At Robynn's suggestion, I'm enclosing an email that I sent her privately > regarding my sister, for whom I have been writing. Although my sister has > gone back out to northampton, I pass on all the information I get here to > her. She feels like her symptoms havn't gotten better despite the > antibiotics, and her fear is that they just aren't doing anything at all > ... she's very scared, and very sick, and we know so little about this > world we've just been immersed in ... we just want her to get better .... > > > > Hi, Robynn, > > I'm beth; I've only been on the list a few weeks, since my sister first > started having difficulties getting proper treatment for her lyme. I'm not > even sure if this is the right place to express my thoughts, but I'm > concerned about my sister, and I'm not sure what else to do. I realize I > signed on during a particularly difficult transition with the group, what > with Marta feeling so terribly ill, but I feel like I must be doing > something wrong. While the information I've gleaned through everyone's > emails has been overwhelmingly helpful and useful and has significantly > contributed to getting my sister into the right care, I've gotten very > little personal response back. At first I thought it was because I was > writing sort of in proxy for my sister, who is not very computer literate > and lives out in northampton, about 2 plus hours from me. But this past > weekend my sister was able to get out here and visit for the first time in > months, and she wrote what I thought was a wonderful email, and not one > person has responded to her, or her questions. I was dismayed. And she, > poor thing, is taking it personally, despite what I tell her about how many > people on the list are struggling with their own symptoms, and etc. What > are we doing wrong??? She's scared to death she's never ever going to get > better, the disease is wreaking havoc on her life, and, now, after I talked > up a storm to her about how wonderful, encouraging, and supportive a group > the lymies are, and after I encouraged her to write a personal message > herself so that people could see who she is in her own voice, she didn't > get one message back. I can't help but feel we're doing something wrong? I > feel rather odd writing to you about it - I've never even used a list-serve > before in my life, so I don't know how any of it works. I just thought if > there were some advice you had to offer on how to do things differently, > maybe you'd have it?? I'm a little desperate to make her feel better, get > her questions answered, and console her fears; this is the only resource I > have .... any thing you could offer would be much appreciated. thank you so > much for taking the time - beth > > > > > ------------------------------------------------------------------------ > Failed tests, classes skipped, forgotten locker combinations. > Remember the good 'ol days > 1/4053/8/_/484634/_/959087057/ > ------------------------------------------------------------------------ > > is dedicated to Marta McCoy, the foundation behind what is > today. > > Easy Reference: > Send a blank email message to: > > -Subscribeegroups - Subscribe to the list through email > -Unsubscribeegroups - Unsubscribe from the list > -Digestegroups - Switch your subscription to a digest format > -Normalegroups - Switch your subscription to normal > > Please send messages not related to Lyme disease to > -Offtopicegroups > > Archives can be accessed at lyme-aid > > Please visit the chat room at chat/lyme-aid > > Quote Link to comment Share on other sites More sharing options...
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