Guest guest Posted October 26, 1999 Report Share Posted October 26, 1999 I really do understand your feelings about this, beth. My thinking is that she has access to many professionals on both sides of an issue and will print what she can learn about the subject. It WILL truly promote more letters from readers and bring some notice to the problems we face. This is also why I would send a potential letter to the list first for approval and/or recommendations for changes. But if most feel as you do, that would be good to know, too. I certainly feel that this a place where the majority should rule. So let me have it, you guys. Pretend I'm Ann Landers and tell me what you think. Thanks. (Michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1999 Report Share Posted October 26, 1999 I feel like the medical and insurance " professions/industries " have let me down completely. I had a glimpse of what my life could be like on Rocephin IV infusions when so many things changed for the better, but symptoms are slowly returning to status quo because I was not allowed to receive the infusions long enough. As someone who has gone most of their adolescent and adult life to age 49, without being diagnosed and or treated, having late stage chronic Lyme Disease, I am being limited to treatment designed for people who have caught the Lyme soon after infection instead of letting me be treated until I am symptom free and have a chance at remission. I almost wish I had never received the infusions because then I wouldn't know how much they could possibly help me and then I wouldn't be so depressed and angry about not being able to receive the neccessary medical treatments I need by greedy insurance companies and the few truly lothsome people in the medical profession who continue to lie about the effectiveness of antibiotic treatments so they can receive personal financial gain, from the insurance companies, and be spotlighted as being watchdogs who are keeping us from harm, when the opposite is the truth. Wishing us all health and freedom from pain, both physical and emotional - P.S. I suggest instead of printing in public how to find Lyme Net, that sci.med.diseases.lyme be used so as to keep this forum as closed to insurance companies and employers or SSA as possible. It can't help to have our private posts to this forum in the hands of the powers that be. My opinion. lisa86@... wrote: > From: lisa86@... > > No, no, no. Use THIS subject line (sorry, forgot to change it). > > > > > Send to -Offtopiconelist messages unrelated to lyme, please. > /archive/lyme-aid > /archives.cgi/Lyme-Documents > To unsubscribe, send email to -unsubscribeonelist > You may substitute " subscribe " , or " digest " or " normal " for > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1999 Report Share Posted October 26, 1999 I'm not sure why I'm feeling this way, but the idea of flooding Ann Landers and Dear Abby doesn't strike me as a good way to spend our energy. While we can supply them w/ great information, they can't possibly cover anything in any detail in their short columns and Lymies might come off as " complaining " rather than making strong statements backed by scientific research. These are columns that people read mostly for their gossipy quality, not as a resource for high quality information. Just my two cents. I know many will disagree. beth [Lyme-aid] Dear Abby/Ann Landers > From: lisa86@... > > No, no, no. Use THIS subject line (sorry, forgot to change it). > > > > > Send to -Offtopiconelist messages unrelated to lyme, please. > /archive/lyme-aid > /archives.cgi/Lyme-Documents > To unsubscribe, send email to -unsubscribeonelist > You may substitute " subscribe " , or " digest " or " normal " for > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 beth, I agree with most of what you said. But my feelings are if just one person reads her article and it can help, then that is good. The more our voice is heard, the better. But I didn't want to be the one to write the cover letter, because I did want it to come off professional and concise and not sound complaining and whiny. You were one of the people I was thinking would be good in helping to compose that letter. is asking for help on it, so I think we should all take her up on that and read the letter and offer suggestions before it gets sent. If anyone doesn't feel good about it, they don't have to participate, but comments would still be greatly appreciated. I think if we provide Ann Landers with some good sites, she can look up info on her own and get both sides of the story, which she always seems to do anyway. But if you are saying we need to focus our energy somewhere else first, I understand that. We have a lot of activities planned right now, and we all know how hard it is to simply sit at our computers and type these posts. Thanks for your valuable input as always, and if I said anything offensive here, it wasn't intended, but may be proof why I shouldn't write the letter. Vicki Re: [Lyme-aid] Dear Abby/Ann Landers >From: beth Feldman <elsbeth@...> > >I'm not sure why I'm feeling this way, but the idea of flooding Ann Landers >and Dear Abby doesn't strike me as a good way to spend our energy. While we >can supply them w/ great information, they can't possibly cover anything in >any detail in their short columns and Lymies might come off as > " complaining " rather than making strong statements backed by scientific >research. These are columns that people read mostly for their gossipy >quality, not as a resource for high quality information. > >Just my two cents. I know many will disagree. > >beth > [Lyme-aid] Dear Abby/Ann Landers > > >> From: lisa86@... >> >> No, no, no. Use THIS subject line (sorry, forgot to change it). >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 , I know antibiotics help us chronic Lyme patients, but it isn't a cure. And I feel like until they find the cure, they should keep treating the symptoms. Its really a crime how we are treated. But hang in there, I think with all the controversy surrounding this disease, that something will soon change. Just like CFID used to be called the Yuppie Disease, its taken more serious these days. I don't know why, but I have a good feeling that something is about to change in our direction. The other day when I was reading the Lyme essay contest winner, Why I hate Lyme, I remember thinking the reason I hate it so much (or the biggest reason) is that is crushes our hope, and without hope for a normal life what do we have left. We can't give up on hope. I'm tired of this disease too and all the mis-information and fighting, but I try hard to hang on to my hope. Good luck and please don't give up in believing something will change. I know its difficult with so much pain and all the other ugly things that come along with Lyme. Thanks for your valuable input. I for one always send the LymeNet address and will stop. It only just occurred to me last night after reading Dr. McSweegan (sp) letter, that it sounded like he was reading our posts. So your email was very timely for me.Thanks Vicki Re: [Lyme-aid] Dear Abby/Ann Landers >From: <swsftwtx@...> > >I feel like the medical and insurance " professions/industries " >have let me down completely. I had a glimpse of what my >life could be like on Rocephin IV infusions when so many >things changed for the better, but symptoms are slowly returning >to status quo because I was not allowed to receive the infusions >long enough. As someone who has gone most of their >adolescent and adult life to age 49, without being diagnosed >and or treated, having late stage chronic Lyme Disease, I am >being limited to treatment designed for people who have caught >the Lyme soon after infection instead of letting me be treated >until I am symptom free and have a chance at remission. I >almost wish I had never received the infusions because then >I wouldn't know how much they could possibly help me and >then I wouldn't be so depressed and angry about not being able >to receive the neccessary medical treatments I need by greedy >insurance companies and the few truly lothsome people in the >medical profession who continue to lie about the effectiveness >of antibiotic treatments so they can receive personal financial >gain, from the insurance companies, and be spotlighted as being >watchdogs who are keeping us from harm, when the opposite >is the truth. > >Wishing us all health and freedom from pain, >both physical and emotional - > >P.S. I suggest instead of printing in public how to >find Lyme Net, that sci.med.diseases.lyme be used >so as to keep this forum as closed to insurance >companies and employers or SSA as possible. It >can't help to have our private posts to this forum >in the hands of the powers that be. My opinion. > >lisa86@... wrote: > >> From: lisa86@... >> >> No, no, no. Use THIS subject line (sorry, forgot to change it). >> >> >> >> > Send to -Offtopiconelist messages unrelated to lyme, please. >> /archive/lyme-aid >> /archives.cgi/Lyme-Documents >> To unsubscribe, send email to -unsubscribeonelist >> You may substitute " subscribe " , or " digest " or " normal " for >> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > >>Send to -Offtopiconelist messages unrelated to lyme, please. >/archive/lyme-aid >/archives.cgi/Lyme-Documents >To unsubscribe, send email to -unsubscribeonelist >You may substitute " subscribe " , or " digest " or " normal " for >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 In a message dated 10/27/1999 2:58:27 AM Eastern Daylight Time, lovey38@... writes: > Vicki & . I agree with both of you in a way. Ann/Abby DO reach > millions of unsuspecting people every day. When I was young those > columns and the comics were the first things I read and my IQ is not in > question here. Ann/Abby have addressed many serious things in their > columns with great effect. I too used to read these sisters and they are powerful BUT ... I know that before they jump into anything they do research. My home health care Nurse just recently was going to do a presentation on Lyme disease with another coworker. We Lyme patients have become BIG, BIG business with our IV treatment! Well, Kim told me when she went online all they could find primarily were abstracts and citations from the Steere - Sigal camp. She knew that wasn't true info, she had too many patiens to believe that stuff, but she didn't have the experience or time to WADE through the real Lyme story. She couldn't tell, and since time was getting to be of the essence, who were the good guys. Now, she is in the medical profession ... she is dealing with a client base that is getting to primarily be Lyme patients with ports or picc lines and she couldn't figure this out. What info do you think either of the sisters would come up with IF they were to ask someone to research the medical aspect of Lyme? Even if you provided alternative medical informatin (that we know to be true) STEERE - SIGAL still own the medical information being put out there about Lyme. Marleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 Vicki & . I agree with both of you in a way. Ann/Abby DO reach millions of unsuspecting people every day. When I was young those columns and the comics were the first things I read and my IQ is not in question here. Ann/Abby have addressed many serious things in their columns with great effect. I do agree that everybody does not need to become involved in the letter writing. So perhaps the writing/critiqueing could be done by private email only between just a few persons. Perhaps a letter to Ann/Abby will at least give some young mother the information needed to help her child. Vicki, give yourself credit. please bear with us mortals. HA that was a joke! I have always been envious of writers because I have always wished I was one. Lovey On Wed, 27 Oct 1999 02:49:06 -0400 " Vicki & Ferraro (home) " <ferraroa@...> writes: > From: " Vicki & Ferraro (home) " <ferraroa@...> > > beth, > I agree with most of what you said. But my feelings are if just one > person > reads her article and it can help, then that is good. The more our > voice is > heard, the better. But I didn't want to be the one to write the cover > letter, because I did want it to come off professional and concise > and not > sound complaining and whiny. You were one of the people I was > thinking > would be good in helping to compose that letter. is asking for > help on > it, so I think we should all take her up on that and read the letter > and > offer suggestions before it gets sent. If anyone doesn't feel good > about it, > they don't have to participate, but comments would still be greatly > appreciated. I think if we provide Ann Landers with some good sites, > she can > look up info on her own and get both sides of the story, which she > always > seems to do anyway. But if you are saying we need to focus our energy > somewhere else first, I understand that. We have a lot of activities > planned > right now, and we all know how hard it is to simply sit at our > computers and > type these posts. > > Thanks for your valuable input as always, and if I said anything > offensive > here, it wasn't intended, but may be proof why I shouldn't write the > letter. > Vicki > Re: [Lyme-aid] Dear Abby/Ann Landers > > > >From: beth Feldman <elsbeth@...> > > > >I'm not sure why I'm feeling this way, but the idea of flooding Ann > Landers > >and Dear Abby doesn't strike me as a good way to spend our energy. > While we > >can supply them w/ great information, they can't possibly cover > anything in > >any detail in their short columns and Lymies might come off as > > " complaining " rather than making strong statements backed by > scientific > >research. These are columns that people read mostly for their > gossipy > >quality, not as a resource for high quality information. > > > >Just my two cents. I know many will disagree. > > > >beth > > [Lyme-aid] Dear Abby/Ann Landers > > > > > >> From: lisa86@... > >> > >> No, no, no. Use THIS subject line (sorry, forgot to change it). > >> > >> > >> > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 : My intention is that whatever we send to Ann Landers will be anonymous, but I do still intend to float my proposed letter out to the list for comments before sending it anywhere. I honestly do understand those of you who are reticent to do this, and I don't want to send a letter that the majority is not happy with. I know that Ann Landers is right up there with reading the National Observer, but she IS able to do some good things by having so much exposure. Give me a chance to write the letter, then see what you all think. I promise I won't send it without your feedback first. (Michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 Dear Vicki & All, First, I want to know if a decision has been made to leave off the e-mail address for the letter or letters being sent to Ann/Abbey? The Lyme Aid e-mail. I really believe that sci.med.diseases.lyme is a better group for those wanting to learn about Lyme or just diagnosed, or seeking answers to unexplained medical problems. I don't think Lyme Aid could handle the volume of e-mail that would be generated by anything published in Ann/Abbey. Plus, there is the factor of exposing ourselves the same as on the news group. I would still be on the list too, if I knew how to keep anything I write from the people like Deja News from archiving forever! Anyone want to send me detailed instrucstions? Like Non Archived NG Post for Dummies! What I wrote for Ann/Abbey was the truth as I see it now after having slipped through the cracks and been allowed the infusions that showed me how my life could be, but unfortunately not on infusion long enough for all symptoms to change, the worst being the Lyme Arthritis along with muscle and deep bone pain, were not touched. But, regardless of the outcome, I do know that betterment is possible, whether it lasts or not for me, who knows. Now, symptoms are reversing back. I do know however that there is Hope, something missing from my life for almost 10 years. I've already been to the depths of depression, getting too close to the edge after years of suffering chronic pain with minimal pain relief in the form of two 4-6 hour pain pills to last 24 hrs. Since I picked a pain management physician out of the Yellow Pages, I know that God directed me to the physician who at the first appointment asked me to be checked for Lyme Disease " to rule it out " as a causative factor in the chronic pain I lived with night and day for so many years on top of the joint pain. Then I was referred to a Lyme literate physician who is as compassionate and caring as I've ever had the good fortune to meet. I was loony on the day I was to see the physician and instead of tossing me out of the office I was invited in to talk about things. Had the physician not been Lyme literate, I'm sure I would have been tossed out the door. Instead I found out a month later that I did indeed suffer from late stage chronic Lyme Disease with neurological involvement. I am committed to doing whatever it takes to reclaim my life as much as possible from this disease. I knew then it wouldn't be easy and have been finding out how very hard it is just recently with self insured employer's coverage. They tell me the peer reviewed articles that I submitted are not valid for treatment, while later telling me the peer reviewed articles are being used to deny me necessary medical treatment. They think I'm stupid enough (at times I am by the way) to not know they have the power to direct the insurance company administrator to pay the bills they approved and now will not pay. I disabused them of that notion yesterday by fax. I got a return call on the line I never answer because the agent for my former employer knew I wouldn't answer it and just wanted to leave me a ho hum message. Because my coverage is under Cobra, I have the option now of filing a complaint through the Department of Labor, and that's the next thing I will need to find the wherewithal to get done. I didn't mean to make anyone believe I was too close to the edge, I was just being honest about my thoughts and feelings regarding having received the infusions and responded to them so very much and not being able to obtain more necessary medical treatment. No, I would not harm myself or anyone else for that matter, it's not the thing to do, but at times as a way of coping there is fantasy about these things and I understand it's not uncommon among people who suffer chronic illness and or chronic pain to do this too. So, please if anyone else might have picked up too much negative from my post, I was being honest, but I am not about to deep end. I have too much good in my life with my wonderful husband and my two " weenie " dogs! Also, the wonderful people I've met through this group, and the sci.med.diseases.lyme group, and a chronic pain group that is also e-mail only. Without the support from the people with these groups, it might be a different story any friends we've had for the past 20 years or so have gone by the wayside. The last two because they didn't want us to take the antibiotic treatments for Lyme Disease because of the media blaming their growing inability to cure infections on people who took too much abx when it wasn't necessary. They felt we should have iron clad confirmation of Lyme Disease, which of course isn't possible. Yet, because we have both responded positively to the abx treatments we do know the diagnosis and the treatments are correct. And we will do whatever it takes to get the treatments we need, but it takes time and money to do so. Thank you for your caring thoughts and words. Wishing us all health and freedom from pain, both physical and emotional - Vicki & Ferraro (home) wrote: > From: " Vicki & Ferraro (home) " <ferraroa@...> > > , > > I know antibiotics help us chronic Lyme patients, but it isn't a cure. And I > feel like until they find the cure, they should keep treating the symptoms. > Its really a crime how we are treated. But hang in there, I think with all > the controversy surrounding this disease, that something will soon change. > Just like CFID used to be called the Yuppie Disease, its taken more serious > these days. I don't know why, but I have a good feeling that something is > about to change in our direction. The other day when I was reading the Lyme > essay contest winner, Why I hate Lyme, I remember thinking the reason I hate > it so much (or the biggest reason) is that is crushes our hope, and without > hope for a normal life what do we have left. We can't give up on hope. I'm > tired of this disease too and all the mis-information and fighting, but I > try hard to hang on to my hope. Good luck and please don't give up in > believing something will change. I know its difficult with so much pain and > all the other ugly things that come along with Lyme. > > Thanks for your valuable input. I for one always send the LymeNet address > and will stop. It only just occurred to me last night after reading Dr. > McSweegan (sp) letter, that it sounded like he was reading our posts. So > your email was very timely for me.Thanks > Vicki > Re: [ ] Dear Abby/Ann Landers > > >From: <swsftwtx@...> > > > >I feel like the medical and insurance " professions/industries " > >have let me down completely. I had a glimpse of what my > >life could be like on Rocephin IV infusions when so many > >things changed for the better, but symptoms are slowly returning > >to status quo because I was not allowed to receive the infusions > >long enough. As someone who has gone most of their > >adolescent and adult life to age 49, without being diagnosed > >and or treated, having late stage chronic Lyme Disease, I am > >being limited to treatment designed for people who have caught > >the Lyme soon after infection instead of letting me be treated > >until I am symptom free and have a chance at remission. I > >almost wish I had never received the infusions because then > >I wouldn't know how much they could possibly help me and > >then I wouldn't be so depressed and angry about not being able > >to receive the neccessary medical treatments I need by greedy > >insurance companies and the few truly lothsome people in the > >medical profession who continue to lie about the effectiveness > >of antibiotic treatments so they can receive personal financial > >gain, from the insurance companies, and be spotlighted as being > >watchdogs who are keeping us from harm, when the opposite > >is the truth. > > > >Wishing us all health and freedom from pain, > >both physical and emotional - > > > >P.S. I suggest instead of printing in public how to > >find Lyme Net, that sci.med.diseases.lyme be used > >so as to keep this forum as closed to insurance > >companies and employers or SSA as possible. It > >can't help to have our private posts to this forum > >in the hands of the powers that be. My opinion. > > > >lisa86@... wrote: > > > >> From: lisa86@... > >> > >> No, no, no. Use THIS subject line (sorry, forgot to change it). > >> > >> > >> > >> > Send to -Offtopiconelist messages unrelated to lyme, > please. > >> /archive/lyme-aid > >> /archives.cgi/Lyme-Documents > >> To unsubscribe, send email to -unsubscribeonelist > >> You may substitute " subscribe " , or " digest " or " normal " for > >> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave > blank both the message and subject header. > > > >>Send to -Offtopiconelist messages unrelated to lyme, please. > >/archive/lyme-aid > >/archives.cgi/Lyme-Documents > >To unsubscribe, send email to -unsubscribeonelist > >You may substitute " subscribe " , or " digest " or " normal " for > >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank > both the message and subject header. > > > > > Send to -Offtopiconelist messages unrelated to lyme, please. > /archive/lyme-aid > /archives.cgi/Lyme-Documents > To unsubscribe, send email to -unsubscribeonelist > You may substitute " subscribe " , or " digest " or " normal " for > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 , I am truly sorry that your insurance companies would not allow you to get the treatment you need and deserve.. I have been on IV's for 2 1/2 weeks and I am slowly getting my life back. I Wish the same for you. Deb- Richmond VA Husband hunts on deer populated area, this where I believe the tick came from First contracted Lyme 1989, bull's eye rash on stomach, flu-like symptoms, treated with Doxy for 21 days and recovered. Re-bitten in Sept, 1998, ringworm like rash, flu-like symptoms in 11-98, went undiagnosed until Aug 1999, symptoms multiplied and become worse. Started on Amoxicillin 500mg and Probenicid 500mg, developed an ulcer. I am now taking IV Rocephen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 Marleen, You make a good point, but I think the purpose of our writing campaign, is as at least to be heard. The more we are heard, the more attention we will get and hopefully someone will sit up and take notice. I think its worth at least trying. We can admit in our letter the there are two sides of this, and that really is what all the controversy is about. Almost everyone I talk to in my community has no idea what is going on, so that is the second thing we need to get out, Education, so we are not only understood, but maybe we can help others who have just taken their doctor's advice and are trying to just live with Lyme and don't realize they can get more help and should. But as always your inputs are very valuable because they teach us what we need to be aware of so we can write a straight forward, and educational letter.Thanks Vicki Re: [ ] Dear Abby/Ann Landers >From: LymeFightr@... > >In a message dated 10/27/1999 2:58:27 AM Eastern Daylight Time, >lovey38@... writes: > >> Vicki & . I agree with both of you in a way. Ann/Abby DO reach >> millions of unsuspecting people every day. When I was young those >> columns and the comics were the first things I read and my IQ is not in >> question here. Ann/Abby have addressed many serious things in their >> columns with great effect. > > >I too used to read these sisters and they are powerful >BUT ... I know that before they jump into anything they do research. > >My home health care Nurse just recently was going to do a presentation on >Lyme disease with another coworker. We Lyme patients have become BIG, BIG >business with our IV treatment! > >Well, Kim told me when she went online all they could find primarily were >abstracts and citations from the Steere - Sigal camp. She knew that wasn't >true info, she had too many patiens to believe that stuff, but she didn't >have the experience or time to WADE through the real Lyme story. > >She couldn't tell, and since time was getting to be of the essence, who were >the good guys. Now, she is in the medical profession ... she is dealing with >a client base that is getting to primarily be Lyme patients with ports or >picc lines and she couldn't figure this out. > >What info do you think either of the sisters would come up with IF they were >to ask someone to research the medical aspect of Lyme? Even if you provided >alternative medical informatin (that we know to be true) STEERE - SIGAL still >own the medical information being put out there about Lyme. > >Marleen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 Actually, Vicki, I was thinking of e-mailing the letter to Ann Landers because it would be faster, but not without sending it to the list first. I have to be out of town tomorrow, but while there, I'll have a chance to work on the letter, so if you can send me your tidbits today, I'll incorporate whatever works in the letters. There will be plenty of time for input from all of you before I send it. And I still think we don't need to identify individuals. Does everyone agree on that point? (Michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 You're very right, beth, about the power being in the hands of the legislators, etc. And I agree, we should be bombarding them as well -- which I have done this week. I still think that national attention will get us to the forefront and when the average Jane/ Doe starts talking about Lyme, those very people in power tend to begin listening. And I certainly hope you WILL help with the editing once I get the letter written, because you bring a different perspective to the topic and are so well-spoken. I also hope to hear from our lawyer friend on the list (sorry, can't come up with your name right now). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 , I think what you just wrote, with minor alterations, should be sent everywhere. You covered so much, and explained the crux of this disease so well. I agree we should leave out our email addresses and names. I think said she would be mailing it the old fashion way. I hope you decide to include this post in that mailing. I also agree we should use sci.med.diseases.Lyme instead of , and I don't think anyone will have a problem with that, ? Thanks for letting us know you are okay. Try to have a good day, read some of those jokes Kay sent on Off-topic today, they are great! I think a laugh a day is a good way to start. And good luck with your complaint filing to the Department of Labor, if it becomes necessary, and I have faith you will be able to find the wherewithal to get it done, because its so necessary. Hope you have a good day. Vicki Re: [Lyme-aid] Dear Abby/Ann Landers >> >> >From: <swsftwtx@...> >> > >> >I feel like the medical and insurance " professions/industries " >> >have let me down completely. I had a glimpse of what my >> >life could be like on Rocephin IV infusions when so many >> >things changed for the better, but symptoms are slowly returning >> >to status quo because I was not allowed to receive the infusions >> >long enough. As someone who has gone most of their >> >adolescent and adult life to age 49, without being diagnosed >> >and or treated, having late stage chronic Lyme Disease, I am >> >being limited to treatment designed for people who have caught >> >the Lyme soon after infection instead of letting me be treated >> >until I am symptom free and have a chance at remission. I >> >almost wish I had never received the infusions because then >> >I wouldn't know how much they could possibly help me and >> >then I wouldn't be so depressed and angry about not being able >> >to receive the neccessary medical treatments I need by greedy >> >insurance companies and the few truly lothsome people in the >> >medical profession who continue to lie about the effectiveness >> >of antibiotic treatments so they can receive personal financial >> >gain, from the insurance companies, and be spotlighted as being >> >watchdogs who are keeping us from harm, when the opposite >> >is the truth. >> > >> >Wishing us all health and freedom from pain, >> >both physical and emotional - >> > >> >P.S. I suggest instead of printing in public how to >> >find Lyme Net, that sci.med.diseases.lyme be used >> >so as to keep this forum as closed to insurance >> >companies and employers or SSA as possible. It >> >can't help to have our private posts to this forum >> >in the hands of the powers that be. My opinion. >> > >> >lisa86@... wrote: >> > >> >> From: lisa86@... >> >> >> >> No, no, no. Use THIS subject line (sorry, forgot to change it). >> >> >> >> >> >> >> >> > Send to -Offtopiconelist messages unrelated to lyme, >> please. >> >> /archive/lyme-aid >> >> /archives.cgi/Lyme-Documents >> >> To unsubscribe, send email to -unsubscribeonelist >> >> You may substitute " subscribe " , or " digest " or " normal " for >> >> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave >> blank both the message and subject header. >> > >> >>Send to -Offtopiconelist messages unrelated to lyme, please. >> >/archive/lyme-aid >> >/archives.cgi/Lyme-Documents >> >To unsubscribe, send email to -unsubscribeonelist >> >You may substitute " subscribe " , or " digest " or " normal " for >> >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank >> both the message and subject header. >> > >> >> > Send to -Offtopiconelist messages unrelated to lyme, please. >> /archive/lyme-aid >> /archives.cgi/Lyme-Documents >> To unsubscribe, send email to -unsubscribeonelist >> You may substitute " subscribe " , or " digest " or " normal " for >> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > >>Send to -Offtopiconelist messages unrelated to lyme, please. >/archive/lyme-aid >/archives.cgi/Lyme-Documents >To unsubscribe, send email to -unsubscribeonelist >You may substitute " subscribe " , or " digest " or " normal " for >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 Vicki, I sincerely can't imagine you saying anything offensive to me! Friendly disagreements are unavoidable and usually productive in the context of trying to strategize a plan of action that could have a great impact, such as we're doing here. You're a total sweetheart. That said, I still feel that Abby/Ann is not the best way to go. Even if one person gets helped, probably 1 million read it and dismiss Lymies once again as harping because there simply won't be the space in their columns to even concisely articulate the problem. ly, I feel the same way about Oprah et al. It is the people w/ power, legislators, insurance company officials, doctors, medical associations, researchers etc... that must be reached NOT your average jane/joe. The people w/ power will only be reached by finding some way to broadcast to them the whole Steere story, his inconsistencies, his impact, his motives grounded in indisputable fact. This is something that newspapers, magazines, NPR and certain TV news shows *could* cover adequately. Being new to all this I don't feel competent enough to put the pieces together in a powerful, clear factual manner but it seems that , Rita, Marleen, Anne(I can't remember who else) are getting there. I certainly feel like I'd be a good editor oncc the piece is written. This is a political issue and in politics proper presentation is everything and NOTHING that gets in the public eye is ever forgotten. Anyway, my 2 cents again, really. I'm not an expert on any of these matters. Be well, beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 That sounds good to me. I don't feel too good right now though. But I'll try to get something to you tonight. Its hard for me to collect my thoughts when I feel like this. Vicki Re: [ ] Dear Abby/Ann Landers >From: lisa86@... > >Actually, Vicki, I was thinking of e-mailing the letter to Ann Landers >because it would be faster, but not without sending it to the list first. I >have to be out of town tomorrow, but while there, I'll have a chance to work >on the letter, so if you can send me your tidbits today, I'll incorporate >whatever works in the letters. There will be plenty of time for input from >all of you before I send it. And I still think we don't need to identify >individuals. Does everyone agree on that point? > > (Michigan) > >>Send to -Offtopiconelist messages unrelated to lyme, please. >/archive/lyme-aid >/archives.cgi/Lyme-Documents >To unsubscribe, send email to -unsubscribeonelist >You may substitute " subscribe " , or " digest " or " normal " for >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 Whatever is determined by the group to be sent is fine with me. I have no problem at all with my post being sent or not. I was responding to the earliest request for Dear Abbey/Ann posts and it changed to be something else before I got mine posted which is okay with me too. Wishing us all health and freedom from pain, both physical and emotional - Vicki & Ferraro (home) wrote: > From: " Vicki & Ferraro (home) " <ferraroa@...> > > , > > I think what you just wrote, with minor alterations, should be sent > everywhere. You covered so much, and explained the crux of this disease so > well. I agree we should leave out our email addresses and names. I think > said she would be mailing it the old fashion way. I hope you decide to > include this post in that mailing. I also agree we should use > sci.med.diseases.Lyme instead of , and I don't think anyone will > have a problem with that, ? Thanks for letting us know you are okay. Try > to have a good day, read some of those jokes Kay sent on Off-topic today, > they are great! I think a laugh a day is a good way to start. And good luck > with your complaint filing to the Department of Labor, if it becomes > necessary, and I have faith you will be able to find the wherewithal to get > it done, because its so necessary. Hope you have a good day. > Vicki > > Re: [ ] Dear Abby/Ann Landers > >> > >> >From: <swsftwtx@...> > >> > > >> >I feel like the medical and insurance " professions/industries " > >> >have let me down completely. I had a glimpse of what my > >> >life could be like on Rocephin IV infusions when so many > >> >things changed for the better, but symptoms are slowly returning > >> >to status quo because I was not allowed to receive the infusions > >> >long enough. As someone who has gone most of their > >> >adolescent and adult life to age 49, without being diagnosed > >> >and or treated, having late stage chronic Lyme Disease, I am > >> >being limited to treatment designed for people who have caught > >> >the Lyme soon after infection instead of letting me be treated > >> >until I am symptom free and have a chance at remission. I > >> >almost wish I had never received the infusions because then > >> >I wouldn't know how much they could possibly help me and > >> >then I wouldn't be so depressed and angry about not being able > >> >to receive the neccessary medical treatments I need by greedy > >> >insurance companies and the few truly lothsome people in the > >> >medical profession who continue to lie about the effectiveness > >> >of antibiotic treatments so they can receive personal financial > >> >gain, from the insurance companies, and be spotlighted as being > >> >watchdogs who are keeping us from harm, when the opposite > >> >is the truth. > >> > > >> >Wishing us all health and freedom from pain, > >> >both physical and emotional - > >> > > >> >P.S. I suggest instead of printing in public how to > >> >find Lyme Net, that sci.med.diseases.lyme be used > >> >so as to keep this forum as closed to insurance > >> >companies and employers or SSA as possible. It > >> >can't help to have our private posts to this forum > >> >in the hands of the powers that be. My opinion. > >> > > >> >lisa86@... wrote: > >> > > >> >> From: lisa86@... > >> >> > >> >> No, no, no. Use THIS subject line (sorry, forgot to change it). > >> >> > >> >> > >> >> > >> >> > Send to -Offtopiconelist messages unrelated to lyme, > >> please. > >> >> /archive/lyme-aid > >> >> /archives.cgi/Lyme-Documents > >> >> To unsubscribe, send email to -unsubscribeonelist > >> >> You may substitute " subscribe " , or " digest " or " normal " for > >> >> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave > >> blank both the message and subject header. > >> > > >> >>Send to -Offtopiconelist messages unrelated to lyme, > please. > >> >/archive/lyme-aid > >> >/archives.cgi/Lyme-Documents > >> >To unsubscribe, send email to -unsubscribeonelist > >> >You may substitute " subscribe " , or " digest " or " normal " for > >> >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave > blank > >> both the message and subject header. > >> > > >> > >> > Send to -Offtopiconelist messages unrelated to lyme, > please. > >> /archive/lyme-aid > >> /archives.cgi/Lyme-Documents > >> To unsubscribe, send email to -unsubscribeonelist > >> You may substitute " subscribe " , or " digest " or " normal " for > >> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave > blank both the message and subject header. > > > >>Send to -Offtopiconelist messages unrelated to lyme, please. > >/archive/lyme-aid > >/archives.cgi/Lyme-Documents > >To unsubscribe, send email to -unsubscribeonelist > >You may substitute " subscribe " , or " digest " or " normal " for > >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank > both the message and subject header. > > > > > Send to -Offtopiconelist messages unrelated to lyme, please. > /archive/lyme-aid > /archives.cgi/Lyme-Documents > To unsubscribe, send email to -unsubscribeonelist > You may substitute " subscribe " , or " digest " or " normal " for > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 thanks , I sent my letter to and I did include my name and e-mail address, so Ann could respond if necessary. I really don't care if she has it, I'm not having her publish my letter, is just going to use ours for bit and pieces to include in the cover letter. (I think) Need to get it straight with her, I'm totally Lyme brain today. You were very nice to share your letter, I'm not so brave, I wrote it quickly and with emotion, and basically just my personal story, because I didn't have the energy to think. Vicki Re: [ ] Dear Abby/Ann Landers >> >> >> >> >From: <swsftwtx@...> >> >> > >> >> >I feel like the medical and insurance " professions/industries " >> >> >have let me down completely. I had a glimpse of what my >> >> >life could be like on Rocephin IV infusions when so many >> >> >things changed for the better, but symptoms are slowly returning >> >> >to status quo because I was not allowed to receive the infusions >> >> >long enough. As someone who has gone most of their >> >> >adolescent and adult life to age 49, without being diagnosed >> >> >and or treated, having late stage chronic Lyme Disease, I am >> >> >being limited to treatment designed for people who have caught >> >> >the Lyme soon after infection instead of letting me be treated >> >> >until I am symptom free and have a chance at remission. I >> >> >almost wish I had never received the infusions because then >> >> >I wouldn't know how much they could possibly help me and >> >> >then I wouldn't be so depressed and angry about not being able >> >> >to receive the neccessary medical treatments I need by greedy >> >> >insurance companies and the few truly lothsome people in the >> >> >medical profession who continue to lie about the effectiveness >> >> >of antibiotic treatments so they can receive personal financial >> >> >gain, from the insurance companies, and be spotlighted as being >> >> >watchdogs who are keeping us from harm, when the opposite >> >> >is the truth. >> >> > >> >> >Wishing us all health and freedom from pain, >> >> >both physical and emotional - >> >> > >> >> >P.S. I suggest instead of printing in public how to >> >> >find Lyme Net, that sci.med.diseases.lyme be used >> >> >so as to keep this forum as closed to insurance >> >> >companies and employers or SSA as possible. It >> >> >can't help to have our private posts to this forum >> >> >in the hands of the powers that be. My opinion. >> >> > >> >> >lisa86@... wrote: >> >> > >> >> >> From: lisa86@... >> >> >> >> >> >> No, no, no. Use THIS subject line (sorry, forgot to change it). >> >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 There's one more attorney, named Carl I think, who recently cautioned us all to stick to facts and not let our emotions run away with us when confronting Steere et al. (Michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 Hi , I agree, Good Grief, don't use as an address for Ann Landers and Abby, all we need, I like this group at the size it is, 150 or so, that may sound selfish of me, but I don't think there is anyway I could wade through all the messages we would get. I have a hard enough time following the Lyme newsgroup. I am always glad to see new subscribers, but too many at once would be impossible to handle, plus we would lose the family closeness we have developed. I also want to keep this group private. The archives can only be accessed by members now, and if the public at large learned about this group, we would have a terrible time with the insurance companies etc, reading our mail. I know that can happen now, but it would be much more likely to occur if we had thousands of members. , in order to keep your posts from archiving on the sci.med.diseases.lyme group, you have to type: x-no-archive:yes at the very top of your post. Hugs, Marta NJ >From: <swsftwtx@...> > >Dear Vicki & All, > >First, I want to know if a decision has been made to >leave off the e-mail address for the letter or letters >being sent to Ann/Abbey? The Lyme Aid e-mail. >I really believe that sci.med.diseases.lyme is a better >group for those wanting to learn about Lyme or just >diagnosed, or seeking answers to unexplained medical >problems. I don't think Lyme Aid could handle the >volume of e-mail that would be generated by anything >published in Ann/Abbey. Plus, there is the factor of >exposing ourselves the same as on the news group. >I would still be on the list too, if I knew how to keep >anything I write from the people like Deja News from >archiving forever! Anyone want to send me detailed >instrucstions? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 Have I said something at some point that made everyone think I was looking to add thousands of people to the list? Believe me, it's the furthest thing from my mind. I can hardly keep up with the volume of mail we generate now. Let me say again ... (a) NOTHING will go to Ann/Abby without this group seeing it first and, ( there is NO chance that the address (or any other internet address) will be attached to the letter. When I e-mail it, I will use another screen name I have that is not connected to in any way. Is there any other assurance I can give? (MI) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 We have two lawyers on the list, one is Lovette from PA, the other is Larry from Nevada. By the way where is Cyntha? She has not posted in awhile, anyone communicating with her? Also Fransea...we haven't heard from her since Hurricane Floyd....., I have been lurking myself, maybe they are too. Wondering, Marta NJ - >From: lisa86@... > >You're very right, beth, about the power being in the hands of the >legislators, etc. And I agree, we should be bombarding them as well -- which >I have done this week. I still think that national attention will get us to >the forefront and when the average Jane/ Doe starts talking about Lyme, >those very people in power tend to begin listening. And I certainly hope you >WILL help with the editing once I get the letter written, because you bring a >different perspective to the topic and are so well-spoken. I also hope to >hear from our lawyer friend on the list (sorry, can't come up with your name >right now). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 Dear Marta & All, I used that disclaimer at top of all my posts but they ended up on Deja News and other ny come lately's too, and I was told there was something else I needed to do to, but never understood it and had to let my membership in that find group lapse. I didn't want to, but could not post and at times felt compelled to do so and my stuff ended up all over the net. If anyone can figure out what else I was supposed to do I'd appreciate knowing what it is that is required to keep these scavengers from archiving my posts till kingdom come. Yes, I know they provide service, but not at my expense please! Also, it may be that using sci.med.diseases.lyme is the best source for those learning about Lyme Disease mostly because of all the neat articles posted by Georgia and others I can't think of right now. Rita for one, Bret (?) and Art too! It is a tremendous source of help and information, and possibly many of the folks there posting may have private insurance where they truly can't be touched, I don't really know, or possibly they are just braver than I am, who knows. But to post our group's access in national papers would be detrimental to this group. As it is now, new members have to be known by someone in the group and recommended as new members, I think, and that helps to keep down the insurance and employer voyeurs as well as the SSA people who probably are to overworked and underpaid to do this kind of reading and searching on their own time, but who knows. The people working for SSA are not bad nor do they especially want to cause us harm, they are caught in a non viable system the same as we are and do the best they can for us I believe. Of course, there are exceptions to everything I've written too. Someone needs to ask Georgia though about printing the sci.med.diseases.lyme news group in national papers, she may have objections too. I don't think so as she is so open and willing to help, but it is the courteous thing to do. My ..10 worth on this subject. - J & M McCoy wrote: > From: " J & M McCoy " <mlmccoy@...> > > Hi , > I agree, Good Grief, don't use as an address for Ann Landers and > Abby, all we need, I like this group at the size it is, 150 or so, that may > sound selfish of me, but I don't think there is anyway I could wade through > all the messages we would get. I have a hard enough time following the Lyme > newsgroup. I am always glad to see new subscribers, but too many at once > would be impossible to handle, plus we would lose the family closeness we > have developed. I also want to keep this group private. The archives can > only be accessed by members now, and if the public at large learned about > this group, we would have a terrible time with the insurance companies etc, > reading our mail. I know that can happen now, but it would be much more > likely to occur if we had thousands of members. > , in order to keep your posts from archiving on the > sci.med.diseases.lyme group, you have to type: x-no-archive:yes > at the very top of your post. > Hugs, > Marta NJ > > >From: <swsftwtx@...> > > > >Dear Vicki & All, > > > >First, I want to know if a decision has been made to > >leave off the e-mail address for the letter or letters > >being sent to Ann/Abbey? The Lyme Aid e-mail. > >I really believe that sci.med.diseases.lyme is a better > >group for those wanting to learn about Lyme or just > >diagnosed, or seeking answers to unexplained medical > >problems. I don't think Lyme Aid could handle the > >volume of e-mail that would be generated by anything > >published in Ann/Abbey. Plus, there is the factor of > >exposing ourselves the same as on the news group. > >I would still be on the list too, if I knew how to keep > >anything I write from the people like Deja News from > >archiving forever! Anyone want to send me detailed > >instrucstions? > > > Send to -Offtopiconelist messages unrelated to lyme, please. > /archive/lyme-aid > /archives.cgi/Lyme-Documents > To unsubscribe, send email to -unsubscribeonelist > You may substitute " subscribe " , or " digest " or " normal " for > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 I'm sorry, I don't know who said what or much else. All I remember is someone stating something to the effect that the LymeAid addy would be published and we needed to get ready for many more new members. That struck real honest fear in me, as it's only this group that provided a " safe " outlet for me in the first place. You can put that stuff on your e-mails on sci.med and then go search the archive places like Deja News and one I found today remarq and the whole post is there even with the " disclaimer " on it not to repost. So, I don't know if other people were doing it not quite right like me, or these archive places post them anyway! But, as far as I can tell it doesn't seem to work putting notice on post not to repost. Thus, I was seriously concerned about a bunch of new people being added all at once. I think the public formum sci.med.diseases.lyme is a great place to begin for anyone and a good place to go for information too, Gerogia, Rita, Art, and others are doing great things on that list. But, we still need a " private " place, or as private as it can be on the net, you know what I mean. I have never meant to direct anything to you personally. Originally, we were all asked to send in posts that might be selected to be sent. I did. Then other decisions were made, and that was fine with me. All I ever wanted to do was make sure the Lyme Aid infor did not get published in any national way in newspapers for the reasons I've mentioned. I'm sorry if you thought I was directing my comments just at you, that is not the case. I do not know who is doing what, or where, or much of anything about the whole deal. Thus if my comments seened aimed at you, that was not my intention, just my lack of knowing who or where to direct them to. Please accept my apology, no harm was intended - lisa86@... wrote: > From: lisa86@... > > Have I said something at some point that made everyone think I was looking to > add thousands of people to the list? Believe me, it's the furthest > thing from my mind. I can hardly keep up with the volume of mail we generate > now. Let me say again ... (a) NOTHING will go to Ann/Abby without this group > seeing it first and, ( there is NO chance that the address (or any > other internet address) will be attached to the letter. When I e-mail it, I > will use another screen name I have that is not connected to in any > way. Is there any other assurance I can give? > > (MI) > > > Send to -Offtopiconelist messages unrelated to lyme, please. > /archive/lyme-aid > /archives.cgi/Lyme-Documents > To unsubscribe, send email to -unsubscribeonelist > You may substitute " subscribe " , or " digest " or " normal " for > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 Marta, When you told , " , in order to keep your posts from archiving on the sci.med.diseases.Lyme group, you have to type: x-no-archive:yes at the very top of your post. " Do you mean I should type that in the body of my posts here at Lyme-aid? Or when posting at Sci.med.disease.lymegroup Vicki BTW, don't worry and I were not going to identify our group in the Ann Landers/Abby letters. Re: [Lyme-aid] Dear Abby/Ann Landers >From: " J & M McCoy " <mlmccoy@...> > >Hi , > I agree, Good Grief, don't use Lyme-aid as an address for Ann Landers and >Abby, all we need, I like this group at the size it is, 150 or so, that may >sound selfish of me, but I don't think there is anyway I could wade through >all the messages we would get. I have a hard enough time following the Lyme >newsgroup. I am always glad to see new subscribers, but too many at once >would be impossible to handle, plus we would lose the family closeness we >have developed. I also want to keep this group private. The archives can >only be accessed by members now, and if the public at large learned about >this group, we would have a terrible time with the insurance companies etc, >reading our mail. I know that can happen now, but it would be much more >likely to occur if we had thousands of members. > , in order to keep your posts from archiving on the >sci.med.diseases.lyme group, you have to type: x-no-archive:yes >at the very top of your post. >Hugs, >Marta NJ > > > > >>From: <swsftwtx@...> >> >>Dear Vicki & All, >> >>First, I want to know if a decision has been made to >>leave off the e-mail address for the letter or letters >>being sent to Ann/Abbey? The Lyme Aid e-mail. >>I really believe that sci.med.diseases.lyme is a better >>group for those wanting to learn about Lyme or just >>diagnosed, or seeking answers to unexplained medical >>problems. I don't think Lyme Aid could handle the >>volume of e-mail that would be generated by anything >>published in Ann/Abbey. Plus, there is the factor of >>exposing ourselves the same as on the news group. >>I would still be on the list too, if I knew how to keep >>anything I write from the people like Deja News from >>archiving forever! Anyone want to send me detailed >>instrucstions? > Quote Link to comment Share on other sites More sharing options...
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