Guest guest Posted January 17, 2010 Report Share Posted January 17, 2010 Hi ,The one thing you will find here is good honest answers from caring Lymies just like yourself... We won't ever ask if " English is your second language " and we will never try to sell you anything... The selling aspect there is what brought this group into being just 7 months ago... We are here for a purpose, to find and end to Lyme and to hold each other's hand at times we know it is necessary to do so... And some of us have even been known to communicate just what a great group we are in private e-mails to those we feel really need some help.. Be glad you found us, this is the best Lyme group going... Glad to have you here,JimI've been thinking...   Message List  Reply | Forward Message #7867 of 7933 < Prev | Next > Re: Re: I've been thinking... My short note on the same subject, the other group..............  May I please vent just a little........    I was new I was Yong I was looking for help to purchase my very first Rife Machine. I fell into the other group hands after 5 weeks around November -2009 .    As time went on I became up set I couldn't figure it I was just looking for some info to purchase a very new item to me a rife machine, for what reason did I feel a bad feeling as though I had a " clan " telling me how wonderful a " certain " machine was a Jim M's machine ....being a new-be I asked my self is this how groups work they allow to promote items Hum,,,    I said to my self something isn't right! I mentioned to the group I was new-be however it seamed to me in my short time being with this other group there was something wrong .... I felt I was being pushed into a corner Jim M -DP's Corner  . After careful revue of old replies from the group I came up with the reason for feeling up set there is a family selling DP Rife Machines on the group for this Jim M as well Jim M is promoting him self as something special. This stressed me . To make a long story short, I got out of the other group and not a day to soon . I tried to talk, talk sense to the mediator with no, no prevail......see ya......!  I wanted help not a family together as a sales premonition team -WORKING the " other "  group! *Now so very pleased to be part of a Wholesome Fun Giving group. You guys and gals are the ensure I was looking for . Thanks Group ! Your the best around !    CSalt C/C 12gr. / 12gr. @ 195 lbs. Duration 3-Months  Sea Salt /high quality-C  starting -MMS. From: Cheryl Young To: Lyme_and_Rife Sent: Fri, January 15, 2010 4:02:29 PMSubject: Re: Re: I've been thinking... LOL! Only the food coming from our side! HA! Cheryl On Fri, Jan 15, 2010 at 2:41 PM, Guyot Léna <drumrollstny (DOT) rr.com> wrote:  Quick! Get a basket! Maybe there are some good eats! ∞, L  FOOD FIGHT FOOD FIGHT!!!!! From: Jim in Jax <jimjax2gmail (DOT) com> To: Lyme and Rife Group thane <Lyme_and_Rife@ yahoogroups. com> Sent: Fri, January 15, 2010 2:57:24 PMSubject: Re: I've been thinking... Hi Lena, Really?  You do think of Thane as our leader? Hmmmm, maybe that Lyme is really gettin' to you.. :-)  When Thane started up our group, I sent him a message saying the best kind of moderator is one who moderates little, and participates like everyone... I told him about Marc and the good success he's had with little moderation, but good participation when he can.  A good group will always work things out... When a moderator is always moderating and refereeing, something is wrong... Usually it is just one or two members that don't really belong... Moderating them quickly and even removing them from the group is sometimes the best thing for the whole group... Do you realize with over 4500 posts we have not had a single food fight here!  Really, that is impressive and shows just what good people belong to our group... And to my knowledge, Thane has not moderated a single post... Our last group, there were often multiple problems daily and I know many of us were not happy... Now we all seem happy!  What a BIG difference.. . And I am sure I speak for many not just myself when I say how stressful our last group was, I got to the point I was stressed just reading the posts and knew anything I posted would be brutalized by just one member that the moderator allowed to happen.. Now I look forward to sitting down with everyone daily, most of who I call my friends... :-) And you are right, Thane like many of us is dealing with a disease and does not always feel well... I am sure none of us wants to add any stress to his life and by being a peaceful group, he can just belong like the rest of us... Kinda like a Sheriff in an old friendly western town, he can leave his gun at the office... :-) I think this is an easy group for new members to just jump in... Everyone is welcomed and quickly and soon it is like they've been here forever... That is the sign of a great group!  I had members on the other group writing directly to me because they feared posting to the group... I got up to 2 weeks behind on my personal e-mails because of this.. I complained to the moderator, telling him the fact there were writing to me and not the group was a sure sign they feared the flavor of the group... But nothing was done...  I always get some private messages, but there I was getting 20 - 30 daily! Hey, what does $@#% mean?  Uh, you better not answer... :-) My fear when we all left there is what kinda info would newbies and I hear it is not open and informative like here.... I hated to see the community get spit up and I held on up to the last moment, but I think all of us on a single day made up our minds this has to end... What happened to you was the beginning of the avalanche and it REALLY bothered me as you did nothing wrong...  And I have been telling others for a long time that stress is a killer for us and I know the flavor of that other group was making me sick, not a healthy situation... I am sure others felt the same way.... Thank goodness we are all here and sharing with each other...  Here we long-haulers are appreciated, there we didn't seem to matter, some didn't even want us there... Here we have so many discussions on many topics, there we were mostly limited to a few machines... Many newbies here may not even realize just how fortunate they are to have found this group and can virtually get answers to all Lyme topics and NOBODY here will try to sell them anything... That is probably the most important thing about any group, " NO SELLING ALLOWED! "  And isn't it interesting we all came here and have not had a single problem! And the real nice thing about this group is your beautiful writing about Lyme and other topics...:-)  You have a way of working the words to eloquently make your point... Be well Lena,Jim I've been thinking...  Message List  Reply | Forward Message #7612 of 7817 < Prev | Next > Re: Re: I've been thinking...Hi Jim, I think of Thane as our leader. He moderates with a light and tolerant hand, and by doing so, has helped this group thrive. I know he doesn't always feel great, and is  silent at times, but I feel his presence and appreciate it. As for conspiring: that's a stressful activity I don't have the energy for. WYSIWYG with me. I love this group and it is an important part of my life. I trust it, with all its fluctuations and morphing, and am deeply touched by the very recent posts of newbies who have been lurking and now are coming forward. Welcome, all of you. We Need you! Every newbie is another seeker of info and the more seekers we have, the more info will be found. They may think they need us long-haulers, but we need them just as much: partly because our being able to give answers shows us that this $@#% disease has been teaching us stuff, that our suffering isn't in vain if we can ease another's fears and concerns, and partly because they help us remember how bewildering it once was, and that things truly DO get better over time. Be well, you long-hauler, you,Léna  Oh darn Lena,I wish you wouldn't have said these things the way you did, I just wrote some similar stuff for Thane and he is going to think you and I conspired off group about this... :-) Uh, is Thane our leader?  I knew we had a moderator, but didn't know who it was?  !!!!  From what I have learned, isn't a moderator supposed to stop fighting on the group and act as a referee? Oh, that was that other group... :-) Jim I've been thinking...  Message List  Reply | Forward Message #7501 of 7600 < Prev | Next > Re: I've been thinking...Hi Thane People come to this group for many reasons. Newbies come for info, and much of the info is repeatedly offered by veterans, because we were all newbies once and understand how overwhelming it all can be. Jim has the right idea in his organized fashion of re-posting great fact-sheets for newbie's benefits; those, BTW, are also welcomed by us less-organized veterans. Others, like me, try to offer info, sources, etc, when questions come up, although sometimes, when I'm really tired, I hope someone else (or Jim) will cover it. Sometimes I highlight it, to check back and see if the question got answered and fill in if it hasn't. Some days I just get involved in my life (yes, a life away from the Lyme-laptop) . Sometimes I go do things with friends (those people who don't have Lyme) For Lymies of the long-haul, our needs may be different. We're sick of explaining Lyme to acquaintances and family who just don't 'get it' and sometimes, when we feel particularly isolated by the disease, the group is a refuge of social solace and emotional support. Banter is a bonding thing that allows us to later open up when we're feeling truly wretched and can't trust non-lymies to comprehend. So when I write from scratch for the eighth time, how to do a low-volume, easy and comfortable coffee enema for a newbie who doesn't yet know anything about detox, I hope I'm meeting someone's needs and assisting in their healing journey. And when I goof around about feeling like a crack-house for critters to a seasoned veteran and fellow sufferer, I'm meeting my own needs and making someone laugh. That's still a healing thing. this group is surprisingly on topic or at least on Lyme-topic, compared to a psoriasis group (there are several) I recently joined which seems to be nothing but social chit-chat, unrelated to the topic at all. I don't know what the answer is, except to say that we are all needy in some way, and must learn to ask and seek, to share and console, and sometimes things flow and morph, simply because they are organic, like their participants. One reason I color my posts, is so that if a newbie decides my 'product' isn't worthwhile, s/he can skip it at a glance. Be well my friend, you're being a good leader.Léna   I've been seeing how our group has been morphing lately from one that keeps personal chit chat to a minimum and focuses mostly on treating lyme to one that includes more personal off topic discussions and less about lyme. So I wanted to ask you all, What kind of group do you want? Because i'm not sure we can have both. In a group that is mostly lyme information focused there seems to be higher quality information shared and new members feel less intimidated to join into the discussion. And in a group where we act like old friends and feel free to talk about many things non lyme related we find more emotional support, which is just as important, but we can come across more cliche-ish, discouraging some new members from joining the discussion and asking their questions. I guess I have always wanted our group to be a place where sick new members can find informed people willing to help and not have to sort through Off Topic posts that exhaust their precious little energy. I'm probably not the only one who has noticed that we get very few new members asking questions anymore. And that to me is a tragedy because there are so many wonderful people here who could offer helpful suggestions. And it seems its those new questions from members that spurs the very best lyme discussion. I want to reassure you that though I am the moderator of this group, it is YOUR group, and its you who choose what you want from it. I am fine with it staying the smaller closer nit group we have now that enjoys the freedom of talking about a whole variety of issues if thats what you want, but just so people understand that its discouraging some new members from joining the discussion. I of course still boast we've got the best group on the net! :)Thane Sat Jan 9, 2010 10:55 pm Show Message Option Guyot Léna lenasquest  Offline  Send Email Mon Jan 11, 2010 9:43 pm Show Message Option Guyot Léna lenasquest  Offline  Send Email -- Cheryl YoungNO MEDICAL ADVICE IS GIVEN HERE.  I am sharing ideas.  Each person is responsible for their own health and should be under the care of health care provider. Sat Jan 16, 2010 12:38 am  Show Message Option Hi From- Lake Tahoe udidit7...  Offline  Send Email I've been thinking...   Message List  Reply | Forward Message #7867 of 7933 < Prev | Next > Re: Re: I've been thinking... My short note on the same subject, the other group..............  May I please vent just a little........    I was new I was Yong I was looking for help to purchase my very first Rife Machine. I fell into the other group hands after 5 weeks around November -2009 .    As time went on I became up set I couldn't figure it I was just looking for some info to purchase a very new item to me a rife machine, for what reason did I feel a bad feeling as though I had a " clan " telling me how wonderful a " certain " machine was a Jim M's machine ....being a new-be I asked my self is this how groups work they allow to promote items Hum,,,    I said to my self something isn't right! I mentioned to the group I was new-be however it seamed to me in my short time being with this other group there was something wrong .... I felt I was being pushed into a corner Jim M -DP's Corner  . After careful revue of old replies from the group I came up with the reason for feeling up set there is a family selling DP Rife Machines on the group for this Jim M as well Jim M is promoting him self as something special. This stressed me . To make a long story short, I got out of the other group and not a day to soon . I tried to talk, talk sense to the mediator with no, no prevail......see ya......!  I wanted help not a family together as a sales premonition team -WORKING the " other "  group! *Now so very pleased to be part of a Wholesome Fun Giving group. You guys and gals are the ensure I was looking for . Thanks Group ! Your the best around !    CSalt C/C 12gr. / 12gr. @ 195 lbs. Duration 3-Months  Sea Salt /high quality-C  starting -MMS. From: Cheryl Young To: Lyme_and_Rife Sent: Fri, January 15, 2010 4:02:29 PMSubject: Re: Re: I've been thinking... LOL! Only the food coming from our side! HA! Cheryl On Fri, Jan 15, 2010 at 2:41 PM, Guyot Léna <drumrollstny (DOT) rr.com> wrote:  Quick! Get a basket! Maybe there are some good eats! ∞, L  FOOD FIGHT FOOD FIGHT!!!!! From: Jim in Jax <jimjax2gmail (DOT) com> To: Lyme and Rife Group thane <Lyme_and_Rife@ yahoogroups. com> Sent: Fri, January 15, 2010 2:57:24 PMSubject: Re: I've been thinking... Hi Lena, Really?  You do think of Thane as our leader? Hmmmm, maybe that Lyme is really gettin' to you.. :-)  When Thane started up our group, I sent him a message saying the best kind of moderator is one who moderates little, and participates like everyone... I told him about Marc and the good success he's had with little moderation, but good participation when he can.  A good group will always work things out... When a moderator is always moderating and refereeing, something is wrong... Usually it is just one or two members that don't really belong... Moderating them quickly and even removing them from the group is sometimes the best thing for the whole group... Do you realize with over 4500 posts we have not had a single food fight here!  Really, that is impressive and shows just what good people belong to our group... And to my knowledge, Thane has not moderated a single post... Our last group, there were often multiple problems daily and I know many of us were not happy... Now we all seem happy!  What a BIG difference.. . And I am sure I speak for many not just myself when I say how stressful our last group was, I got to the point I was stressed just reading the posts and knew anything I posted would be brutalized by just one member that the moderator allowed to happen.. Now I look forward to sitting down with everyone daily, most of who I call my friends... :-) And you are right, Thane like many of us is dealing with a disease and does not always feel well... I am sure none of us wants to add any stress to his life and by being a peaceful group, he can just belong like the rest of us... Kinda like a Sheriff in an old friendly western town, he can leave his gun at the office... :-) I think this is an easy group for new members to just jump in... Everyone is welcomed and quickly and soon it is like they've been here forever... That is the sign of a great group!  I had members on the other group writing directly to me because they feared posting to the group... I got up to 2 weeks behind on my personal e-mails because of this.. I complained to the moderator, telling him the fact there were writing to me and not the group was a sure sign they feared the flavor of the group... But nothing was done...  I always get some private messages, but there I was getting 20 - 30 daily! Hey, what does $@#% mean?  Uh, you better not answer... :-) My fear when we all left there is what kinda info would newbies and I hear it is not open and informative like here.... I hated to see the community get spit up and I held on up to the last moment, but I think all of us on a single day made up our minds this has to end... What happened to you was the beginning of the avalanche and it REALLY bothered me as you did nothing wrong...  And I have been telling others for a long time that stress is a killer for us and I know the flavor of that other group was making me sick, not a healthy situation... I am sure others felt the same way.... Thank goodness we are all here and sharing with each other...  Here we long-haulers are appreciated, there we didn't seem to matter, some didn't even want us there... Here we have so many discussions on many topics, there we were mostly limited to a few machines... Many newbies here may not even realize just how fortunate they are to have found this group and can virtually get answers to all Lyme topics and NOBODY here will try to sell them anything... That is probably the most important thing about any group, " NO SELLING ALLOWED! "  And isn't it interesting we all came here and have not had a single problem! And the real nice thing about this group is your beautiful writing about Lyme and other topics...:-)  You have a way of working the words to eloquently make your point... Be well Lena,Jim I've been thinking...  Message List  Reply | Forward Message #7612 of 7817 < Prev | Next > Re: Re: I've been thinking...Hi Jim, I think of Thane as our leader. He moderates with a light and tolerant hand, and by doing so, has helped this group thrive. I know he doesn't always feel great, and is  silent at times, but I feel his presence and appreciate it. As for conspiring: that's a stressful activity I don't have the energy for. WYSIWYG with me. I love this group and it is an important part of my life. I trust it, with all its fluctuations and morphing, and am deeply touched by the very recent posts of newbies who have been lurking and now are coming forward. Welcome, all of you. We Need you! Every newbie is another seeker of info and the more seekers we have, the more info will be found. They may think they need us long-haulers, but we need them just as much: partly because our being able to give answers shows us that this $@#% disease has been teaching us stuff, that our suffering isn't in vain if we can ease another's fears and concerns, and partly because they help us remember how bewildering it once was, and that things truly DO get better over time. Be well, you long-hauler, you,Léna  Oh darn Lena,I wish you wouldn't have said these things the way you did, I just wrote some similar stuff for Thane and he is going to think you and I conspired off group about this... :-) Uh, is Thane our leader?  I knew we had a moderator, but didn't know who it was?  !!!!  From what I have learned, isn't a moderator supposed to stop fighting on the group and act as a referee? Oh, that was that other group... :-) Jim I've been thinking...  Message List  Reply | Forward Message #7501 of 7600 < Prev | Next > Re: I've been thinking...Hi Thane People come to this group for many reasons. Newbies come for info, and much of the info is repeatedly offered by veterans, because we were all newbies once and understand how overwhelming it all can be. Jim has the right idea in his organized fashion of re-posting great fact-sheets for newbie's benefits; those, BTW, are also welcomed by us less-organized veterans. Others, like me, try to offer info, sources, etc, when questions come up, although sometimes, when I'm really tired, I hope someone else (or Jim) will cover it. Sometimes I highlight it, to check back and see if the question got answered and fill in if it hasn't. Some days I just get involved in my life (yes, a life away from the Lyme-laptop) . Sometimes I go do things with friends (those people who don't have Lyme) For Lymies of the long-haul, our needs may be different. We're sick of explaining Lyme to acquaintances and family who just don't 'get it' and sometimes, when we feel particularly isolated by the disease, the group is a refuge of social solace and emotional support. Banter is a bonding thing that allows us to later open up when we're feeling truly wretched and can't trust non-lymies to comprehend. So when I write from scratch for the eighth time, how to do a low-volume, easy and comfortable coffee enema for a newbie who doesn't yet know anything about detox, I hope I'm meeting someone's needs and assisting in their healing journey. And when I goof around about feeling like a crack-house for critters to a seasoned veteran and fellow sufferer, I'm meeting my own needs and making someone laugh. That's still a healing thing. this group is surprisingly on topic or at least on Lyme-topic, compared to a psoriasis group (there are several) I recently joined which seems to be nothing but social chit-chat, unrelated to the topic at all. I don't know what the answer is, except to say that we are all needy in some way, and must learn to ask and seek, to share and console, and sometimes things flow and morph, simply because they are organic, like their participants. One reason I color my posts, is so that if a newbie decides my 'product' isn't worthwhile, s/he can skip it at a glance. Be well my friend, you're being a good leader.Léna   I've been seeing how our group has been morphing lately from one that keeps personal chit chat to a minimum and focuses mostly on treating lyme to one that includes more personal off topic discussions and less about lyme. So I wanted to ask you all, What kind of group do you want? Because i'm not sure we can have both. In a group that is mostly lyme information focused there seems to be higher quality information shared and new members feel less intimidated to join into the discussion. And in a group where we act like old friends and feel free to talk about many things non lyme related we find more emotional support, which is just as important, but we can come across more cliche-ish, discouraging some new members from joining the discussion and asking their questions. I guess I have always wanted our group to be a place where sick new members can find informed people willing to help and not have to sort through Off Topic posts that exhaust their precious little energy. I'm probably not the only one who has noticed that we get very few new members asking questions anymore. And that to me is a tragedy because there are so many wonderful people here who could offer helpful suggestions. And it seems its those new questions from members that spurs the very best lyme discussion. I want to reassure you that though I am the moderator of this group, it is YOUR group, and its you who choose what you want from it. I am fine with it staying the smaller closer nit group we have now that enjoys the freedom of talking about a whole variety of issues if thats what you want, but just so people understand that its discouraging some new members from joining the discussion. I of course still boast we've got the best group on the net! :)Thane Sat Jan 9, 2010 10:55 pm Show Message Option Guyot Léna lenasquest  Offline  Send Email Mon Jan 11, 2010 9:43 pm Show Message Option Guyot Léna lenasquest  Offline  Send Email -- Cheryl YoungNO MEDICAL ADVICE IS GIVEN HERE.  I am sharing ideas.  Each person is responsible for their own health and should be under the care of health care provider. Sat Jan 16, 2010 12:38 am  Show Message Option Hi From- Lake Tahoe udidit7...  Offline  Send Email Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2010 Report Share Posted January 17, 2010 What a great bunch of Lymies I now have for Friends. Thanks every one for worm hearted welcoming... I most certainly feel blessed to have some one to share the times of my life with Lyme's . Special thanks to Jim He shares so willing all he knows and so giving of great knowledge. Thanks to him, people like him, I'm Feeling better ! Jim your the best............ CSalt C/C 12gr. / 12gr. @ 195 lbs. Duration 2-Months Sea Salt /high quality-C 3 times day started-mms. To: Lyme and Rife Group thane <Lyme_and_Rife >Sent: Sat, January 16, 2010 6:16:45 PMSubject: Re: I've been thinking.. Hi ,The one thing you will find here is good honest answers from caring Lymies just like yourself... We won't ever ask if "English is your second language" and we will never try to sell you anything... The selling aspect there is what brought this group into being just 7 months ago... We are here for a purpose, to find and end to Lyme and to hold each other's hand at times we know it is necessary to do so... And some of us have even been known to communicate just what a great group we are in private e-mails to those we feel really need some help..Be glad you found us, this is the best Lyme group going... Glad to have you here,JimI've been thinking... Message List Reply | Forward Message #7867 of 7933 < Prev | Next > Re: Re: I've been thinking... My short note on the same subject, the other group....... ....... May I please vent just a little...... .. I was new I was Yong I was looking for help to purchase my very first Rife Machine. I fell into the other group hands after 5 weeks around November -2009 . As time went on I became up set I couldn't figure it I was just looking for some info to purchase a very new item to me a rife machine, for what reason did I feel a bad feeling as though I had a "clan" telling me how wonderful a "certain" machine was a Jim M's machine ....being a new-be I asked my self is this how groups work they allow to promote items Hum,,, I said to my self something isn't right! I mentioned to the group I was new-be however it seamed to me in my short time being with this other group there was something wrong .... I felt I was being pushed into a corner Jim M -DP's Corner . After careful revue of old replies from the group I came up with the reason for feeling up set there is a family selling DP Rife Machines on the group for this Jim M as well Jim M is promoting him self as something special. This stressed me . To make a long story short, I got out of the other group and not a day to soon . I tried to talk, talk sense to the mediator with no, no prevail..... .see ya......! I wanted help not a family together as a sales premonition team -WORKING the "other" group! *Now so very pleased to be part of a Wholesome Fun Giving group. You guys and gals are the ensure I was looking for . Thanks Group ! Your the best around ! CSalt C/C 12gr. / 12gr. @ 195 lbs. Duration 3-Months Sea Salt /high quality-C starting -MMS. To: Lyme_and_Rife@ yahoogroups. comSent: Fri, January 15, 2010 4:02:29 PMSubject: Re: Re: I've been thinking... LOL! Only the food coming from our side! HA! Cheryl On Fri, Jan 15, 2010 at 2:41 PM, Guyot Léna <drumrollstny (DOT) rr.com> wrote: Quick! Get a basket! Maybe there are some good eats! ∞, L FOOD FIGHT FOOD FIGHT!!!!! From: Jim in Jax <jimjax2gmail (DOT) com>To: Lyme and Rife Group thane <Lyme_and_Rife@ yahoogroups. com>Sent: Fri, January 15, 2010 2:57:24 PMSubject: Re: I've been thinking... Hi Lena, Really? You do think of Thane as our leader? Hmmmm, maybe that Lyme is really gettin' to you.. :-) When Thane started up our group, I sent him a message saying the best kind of moderator is one who moderates little, and participates like everyone... I told him about Marc and the good success he's had with little moderation, but good participation when he can. A good group will always work things out... When a moderator is always moderating and refereeing, something is wrong... Usually it is just one or two members that don't really belong... Moderating them quickly and even removing them from the group is sometimes the best thing for the whole group... Do you realize with over 4500 posts we have not had a single food fight here! Really, that is impressive and shows just what good people belong to our group... And to my knowledge, Thane has not moderated a single post... Our last group, there were often multiple problems daily and I know many of us were not happy... Now we all seem happy! What a BIG difference.. . And I am sure I speak for many not just myself when I say how stressful our last group was, I got to the point I was stressed just reading the posts and knew anything I posted would be brutalized by just one member that the moderator allowed to happen.. Now I look forward to sitting down with everyone daily, most of who I call my friends... :-) And you are right, Thane like many of us is dealing with a disease and does not always feel well... I am sure none of us wants to add any stress to his life and by being a peaceful group, he can just belong like the rest of us... Kinda like a Sheriff in an old friendly western town, he can leave his gun at the office... :-) I think this is an easy group for new members to just jump in... Everyone is welcomed and quickly and soon it is like they've been here forever... That is the sign of a great group! I had members on the other group writing directly to me because they feared posting to the group... I got up to 2 weeks behind on my personal e-mails because of this.. I complained to the moderator, telling him the fact there were writing to me and not the group was a sure sign they feared the flavor of the group... But nothing was done... I always get some private messages, but there I was getting 20 - 30 daily! Hey, what does $@#% mean? Uh, you better not answer... :-) My fear when we all left there is what kinda info would newbies and I hear it is not open and informative like here.... I hated to see the community get spit up and I held on up to the last moment, but I think all of us on a single day made up our minds this has to end... What happened to you was the beginning of the avalanche and it REALLY bothered me as you did nothing wrong... And I have been telling others for a long time that stress is a killer for us and I know the flavor of that other group was making me sick, not a healthy situation... I am sure others felt the same way.... Thank goodness we are all here and sharing with each other... Here we long-haulers are appreciated, there we didn't seem to matter, some didn't even want us there... Here we have so many discussions on many topics, there we were mostly limited to a few machines... Many newbies here may not even realize just how fortunate they are to have found this group and can virtually get answers to all Lyme topics and NOBODY here will try to sell them anything... That is probably the most important thing about any group, "NO SELLING ALLOWED!" And isn't it interesting we all came here and have not had a single problem! And the real nice thing about this group is your beautiful writing about Lyme and other topics...:-) You have a way of working the words to eloquently make your point... Be well Lena, Jim I've been thinking... Message List Reply | Forward Message #7612 of 7817 < Prev | Next > Re: Re: I've been thinking... Hi Jim, I think of Thane as our leader. He moderates with a light and tolerant hand, and by doing so, has helped this group thrive. I know he doesn't always feel great, and is silent at times, but I feel his presence and appreciate it. As for conspiring: that's a stressful activity I don't have the energy for. WYSIWYG with me. I love this group and it is an important part of my life. I trust it, with all its fluctuations and morphing, and am deeply touched by the very recent posts of newbies who have been lurking and now are coming forward. Welcome, all of you. We Need you! Every newbie is another seeker of info and the more seekers we have, the more info will be found. They may think they need us long-haulers, but we need them just as much: partly because our being able to give answers shows us that this $@#% disease has been teaching us stuff, that our suffering isn't in vain if we can ease another's fears and concerns, and partly because they help us remember how bewildering it once was, and that things truly DO get better over time. Be well, you long-hauler, you, Léna Oh darn Lena, I wish you wouldn't have said these things the way you did, I just wrote some similar stuff for Thane and he is going to think you and I conspired off group about this... :-) Uh, is Thane our leader? I knew we had a moderator, but didn't know who it was? !!!! From what I have learned, isn't a moderator supposed to stop fighting on the group and act as a referee? Oh, that was that other group... :-) Jim I've been thinking... Message List Reply | Forward Message #7501 of 7600 < Prev | Next > Re: I've been thinking... Hi Thane People come to this group for many reasons. Newbies come for info, and much of the info is repeatedly offered by veterans, because we were all newbies once and understand how overwhelming it all can be. Jim has the right idea in his organized fashion of re-posting great fact-sheets for newbie's benefits; those, BTW, are also welcomed by us less-organized veterans. Others, like me, try to offer info, sources, etc, when questions come up, although sometimes, when I'm really tired, I hope someone else (or Jim) will cover it. Sometimes I highlight it, to check back and see if the question got answered and fill in if it hasn't. Some days I just get involved in my life (yes, a life away from the Lyme-laptop) . Sometimes I go do things with friends (those people who don't have Lyme) For Lymies of the long-haul, our needs may be different. We're sick of explaining Lyme to acquaintances and family who just don't 'get it' and sometimes, when we feel particularly isolated by the disease, the group is a refuge of social solace and emotional support. Banter is a bonding thing that allows us to later open up when we're feeling truly wretched and can't trust non-lymies to comprehend. So when I write from scratch for the eighth time, how to do a low-volume, easy and comfortable coffee enema for a newbie who doesn't yet know anything about detox, I hope I'm meeting someone's needs and assisting in their healing journey. And when I goof around about feeling like a crack-house for critters to a seasoned veteran and fellow sufferer, I'm meeting my own needs and making someone laugh. That's still a healing thing. this group is surprisingly on topic or at least on Lyme-topic, compared to a psoriasis group (there are several) I recently joined which seems to be nothing but social chit-chat, unrelated to the topic at all. I don't know what the answer is, except to say that we are all needy in some way, and must learn to ask and seek, to share and console, and sometimes things flow and morph, simply because they are organic, like their participants. One reason I color my posts, is so that if a newbie decides my 'product' isn't worthwhile, s/he can skip it at a glance. Be well my friend, you're being a good leader. Léna I've been seeing how our group has been morphing lately from one that keeps personal chit chat to a minimum and focuses mostly on treating lyme to one that includes more personal off topic discussions and less about lyme. So I wanted to ask you all, What kind of group do you want? Because i'm not sure we can have both. In a group that is mostly lyme information focused there seems to be higher quality information shared and new members feel less intimidated to join into the discussion. And in a group where we act like old friends and feel free to talk about many things non lyme related we find more emotional support, which is just as important, but we can come across more cliche-ish, discouraging some new members from joining the discussion and asking their questions. I guess I have always wanted our group to be a place where sick new members can find informed people willing to help and not have to sort through Off Topic posts that exhaust their precious little energy. I'm probably not the only one who has noticed that we get very few new members asking questions anymore. And that to me is a tragedy because there are so many wonderful people here who could offer helpful suggestions. And it seems its those new questions from members that spurs the very best lyme discussion. I want to reassure you that though I am the moderator of this group, it is YOUR group, and its you who choose what you want from it. I am fine with it staying the smaller closer nit group we have now that enjoys the freedom of talking about a whole variety of issues if thats what you want, but just so people understand that its discouraging some new members from joining the discussion. I of course still boast we've got the best group on the net! :)Thane Sat Jan 9, 2010 10:55 pm Show Message Option Guyot Léna lenasquest Offline Send Email Mon Jan 11, 2010 9:43 pm Show Message Option Guyot Léna lenasquest Offline Send Email -- Cheryl YoungNO MEDICAL ADVICE IS GIVEN HERE. I am sharing ideas. Each person is responsible for their own health and should be under the care of health care provider. Sat Jan 16, 2010 12:38 am Show Message Option Hi From- Lake Tahoe udidit7... Offline Send Email I've been thinking... Message List Reply | Forward Message #7867 of 7933 < Prev | Next > Re: Re: I've been thinking... My short note on the same subject, the other group....... ....... May I please vent just a little...... .. I was new I was Yong I was looking for help to purchase my very first Rife Machine. I fell into the other group hands after 5 weeks around November -2009 . As time went on I became up set I couldn't figure it I was just looking for some info to purchase a very new item to me a rife machine, for what reason did I feel a bad feeling as though I had a "clan" telling me how wonderful a "certain" machine was a Jim M's machine ....being a new-be I asked my self is this how groups work they allow to promote items Hum,,, I said to my self something isn't right! I mentioned to the group I was new-be however it seamed to me in my short time being with this other group there was something wrong .... I felt I was being pushed into a corner Jim M -DP's Corner . After careful revue of old replies from the group I came up with the reason for feeling up set there is a family selling DP Rife Machines on the group for this Jim M as well Jim M is promoting him self as something special. This stressed me . To make a long story short, I got out of the other group and not a day to soon . I tried to talk, talk sense to the mediator with no, no prevail..... .see ya......! I wanted help not a family together as a sales premonition team -WORKING the "other" group! *Now so very pleased to be part of a Wholesome Fun Giving group. You guys and gals are the ensure I was looking for . Thanks Group ! Your the best around ! CSalt C/C 12gr. / 12gr. @ 195 lbs. Duration 3-Months Sea Salt /high quality-C starting -MMS. To: Lyme_and_Rife@ yahoogroups. comSent: Fri, January 15, 2010 4:02:29 PMSubject: Re: Re: I've been thinking... LOL! Only the food coming from our side! HA! Cheryl On Fri, Jan 15, 2010 at 2:41 PM, Guyot Léna <drumrollstny (DOT) rr.com> wrote: Quick! Get a basket! Maybe there are some good eats! ∞, L FOOD FIGHT FOOD FIGHT!!!!! From: Jim in Jax <jimjax2gmail (DOT) com>To: Lyme and Rife Group thane <Lyme_and_Rife@ yahoogroups. com>Sent: Fri, January 15, 2010 2:57:24 PMSubject: Re: I've been thinking... Hi Lena, Really? You do think of Thane as our leader? Hmmmm, maybe that Lyme is really gettin' to you.. :-) When Thane started up our group, I sent him a message saying the best kind of moderator is one who moderates little, and participates like everyone... I told him about Marc and the good success he's had with little moderation, but good participation when he can. A good group will always work things out... When a moderator is always moderating and refereeing, something is wrong... Usually it is just one or two members that don't really belong... Moderating them quickly and even removing them from the group is sometimes the best thing for the whole group... Do you realize with over 4500 posts we have not had a single food fight here! Really, that is impressive and shows just what good people belong to our group... And to my knowledge, Thane has not moderated a single post... Our last group, there were often multiple problems daily and I know many of us were not happy... Now we all seem happy! What a BIG difference.. . And I am sure I speak for many not just myself when I say how stressful our last group was, I got to the point I was stressed just reading the posts and knew anything I posted would be brutalized by just one member that the moderator allowed to happen.. Now I look forward to sitting down with everyone daily, most of who I call my friends... :-) And you are right, Thane like many of us is dealing with a disease and does not always feel well... I am sure none of us wants to add any stress to his life and by being a peaceful group, he can just belong like the rest of us... Kinda like a Sheriff in an old friendly western town, he can leave his gun at the office... :-) I think this is an easy group for new members to just jump in... Everyone is welcomed and quickly and soon it is like they've been here forever... That is the sign of a great group! I had members on the other group writing directly to me because they feared posting to the group... I got up to 2 weeks behind on my personal e-mails because of this.. I complained to the moderator, telling him the fact there were writing to me and not the group was a sure sign they feared the flavor of the group... But nothing was done... I always get some private messages, but there I was getting 20 - 30 daily! Hey, what does $@#% mean? Uh, you better not answer... :-) My fear when we all left there is what kinda info would newbies and I hear it is not open and informative like here.... I hated to see the community get spit up and I held on up to the last moment, but I think all of us on a single day made up our minds this has to end... What happened to you was the beginning of the avalanche and it REALLY bothered me as you did nothing wrong... And I have been telling others for a long time that stress is a killer for us and I know the flavor of that other group was making me sick, not a healthy situation... I am sure others felt the same way.... Thank goodness we are all here and sharing with each other... Here we long-haulers are appreciated, there we didn't seem to matter, some didn't even want us there... Here we have so many discussions on many topics, there we were mostly limited to a few machines... Many newbies here may not even realize just how fortunate they are to have found this group and can virtually get answers to all Lyme topics and NOBODY here will try to sell them anything... That is probably the most important thing about any group, "NO SELLING ALLOWED!" And isn't it interesting we all came here and have not had a single problem! And the real nice thing about this group is your beautiful writing about Lyme and other topics...:-) You have a way of working the words to eloquently make your point... Be well Lena, Jim I've been thinking... Message List Reply | Forward Message #7612 of 7817 < Prev | Next > Re: Re: I've been thinking... Hi Jim, I think of Thane as our leader. He moderates with a light and tolerant hand, and by doing so, has helped this group thrive. I know he doesn't always feel great, and is silent at times, but I feel his presence and appreciate it. As for conspiring: that's a stressful activity I don't have the energy for. WYSIWYG with me. I love this group and it is an important part of my life. I trust it, with all its fluctuations and morphing, and am deeply touched by the very recent posts of newbies who have been lurking and now are coming forward. Welcome, all of you. We Need you! Every newbie is another seeker of info and the more seekers we have, the more info will be found. They may think they need us long-haulers, but we need them just as much: partly because our being able to give answers shows us that this $@#% disease has been teaching us stuff, that our suffering isn't in vain if we can ease another's fears and concerns, and partly because they help us remember how bewildering it once was, and that things truly DO get better over time. Be well, you long-hauler, you, Léna Oh darn Lena, I wish you wouldn't have said these things the way you did, I just wrote some similar stuff for Thane and he is going to think you and I conspired off group about this... :-) Uh, is Thane our leader? I knew we had a moderator, but didn't know who it was? !!!! From what I have learned, isn't a moderator supposed to stop fighting on the group and act as a referee? Oh, that was that other group... :-) Jim I've been thinking... Message List Reply | Forward Message #7501 of 7600 < Prev | Next > Re: I've been thinking... Hi Thane People come to this group for many reasons. Newbies come for info, and much of the info is repeatedly offered by veterans, because we were all newbies once and understand how overwhelming it all can be. Jim has the right idea in his organized fashion of re-posting great fact-sheets for newbie's benefits; those, BTW, are also welcomed by us less-organized veterans. Others, like me, try to offer info, sources, etc, when questions come up, although sometimes, when I'm really tired, I hope someone else (or Jim) will cover it. Sometimes I highlight it, to check back and see if the question got answered and fill in if it hasn't. Some days I just get involved in my life (yes, a life away from the Lyme-laptop) . Sometimes I go do things with friends (those people who don't have Lyme) For Lymies of the long-haul, our needs may be different. We're sick of explaining Lyme to acquaintances and family who just don't 'get it' and sometimes, when we feel particularly isolated by the disease, the group is a refuge of social solace and emotional support. Banter is a bonding thing that allows us to later open up when we're feeling truly wretched and can't trust non-lymies to comprehend. So when I write from scratch for the eighth time, how to do a low-volume, easy and comfortable coffee enema for a newbie who doesn't yet know anything about detox, I hope I'm meeting someone's needs and assisting in their healing journey. And when I goof around about feeling like a crack-house for critters to a seasoned veteran and fellow sufferer, I'm meeting my own needs and making someone laugh. That's still a healing thing. this group is surprisingly on topic or at least on Lyme-topic, compared to a psoriasis group (there are several) I recently joined which seems to be nothing but social chit-chat, unrelated to the topic at all. I don't know what the answer is, except to say that we are all needy in some way, and must learn to ask and seek, to share and console, and sometimes things flow and morph, simply because they are organic, like their participants. One reason I color my posts, is so that if a newbie decides my 'product' isn't worthwhile, s/he can skip it at a glance. Be well my friend, you're being a good leader. Léna I've been seeing how our group has been morphing lately from one that keeps personal chit chat to a minimum and focuses mostly on treating lyme to one that includes more personal off topic discussions and less about lyme. So I wanted to ask you all, What kind of group do you want? Because i'm not sure we can have both. In a group that is mostly lyme information focused there seems to be higher quality information shared and new members feel less intimidated to join into the discussion. And in a group where we act like old friends and feel free to talk about many things non lyme related we find more emotional support, which is just as important, but we can come across more cliche-ish, discouraging some new members from joining the discussion and asking their questions. I guess I have always wanted our group to be a place where sick new members can find informed people willing to help and not have to sort through Off Topic posts that exhaust their precious little energy. I'm probably not the only one who has noticed that we get very few new members asking questions anymore. And that to me is a tragedy because there are so many wonderful people here who could offer helpful suggestions. And it seems its those new questions from members that spurs the very best lyme discussion. I want to reassure you that though I am the moderator of this group, it is YOUR group, and its you who choose what you want from it. I am fine with it staying the smaller closer nit group we have now that enjoys the freedom of talking about a whole variety of issues if thats what you want, but just so people understand that its discouraging some new members from joining the discussion. I of course still boast we've got the best group on the net! :)Thane Sat Jan 9, 2010 10:55 pm Show Message Option Guyot Léna lenasquest Offline Send Email Mon Jan 11, 2010 9:43 pm Show Message Option Guyot Léna lenasquest Offline Send Email -- Cheryl YoungNO MEDICAL ADVICE IS GIVEN HERE. I am sharing ideas. Each person is responsible for their own health and should be under the care of health care provider. Sat Jan 16, 2010 12:38 am Show Message Option Hi From- Lake Tahoe udidit7... Offline Send Email Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Well Hi Connie,You belong if you have Lyme or are here on behalf of a loved one with Lyme, uh and of course you are breathing... :-)You don't need to own a rife machine to be here, just kick back and enjoy the group... WE are all here for each other... Testing positive for Lyme is like winning the Lyme lottery! With that if you wanted, you could get treated by the allopathics as so many will not treat without a positive Lyme test... So Congrats! So many have negative tests and most doctors refuse to treat them for anything, not even their systems... Since you are not working, I hope you have considered or are on SSDI... Social Security Disability Insurance... For many Lymies, this is a lifesaver... The relapse you experienced after coming off of the abx is so very common.. It is always good to be using analternative protocol along with the abx, then when you stop the abx, the other protocol hopefully will keep the bacterial load down... Don't worry how your writing is, it is easy for me to understand... Actually, I break up my paragraphs also as itis easier for many to read... So now that you have made the " maiden' post, hope to hear more from you.... :-)-- Take care,JimSalt/C, EMEM, MMS ozoneDisclaimer: THERE IS NO MEDICAL ADVICE HERE! This list is the 1st Amendment in action. I am not an expert, I do share my many years of experiences and knowledge I have learned from others, both on group and privately. The things you will find here are for information and research purposes only. I am sharing information I believe in. If you act on ideas found here, you do so at your own risk. Self-help requires intelligence, common sense, and the ability to take responsibility for your own actions. Do not use any ideas found here without consulting a medical professional, unless you are a researcher or health care provider. I've been thinking... Message List Reply | Forward Message #8026 of 8056 < Prev | Next > Re: Re: I've been thinking... " I've been thinking " it's time that I introduce myself and tell you what I think of your group. First of all, I love this group just like it is. It's very caring and close knit and I like that a lot. I've been reading here for a while but since I don't rife I didn't know if I belonged. I was looking into it and haven't given up the possibility at a later time. Anyway, my name is Connie and I'm definitely not new to lyme. I've been sick since 1989 but was dx'd with CFS/FMS. In 2004 I finally found out about lyme and was tested and it was positive. I've been in treatment since early 2005 with abx. I've been unable to work for the most part of the 20 years. I'm much better but still not able to work unfortunately. In Sept.09 I went off my bicillin shots that I had been on for over 2 years and did OK for a couple of months then BAM! I don't want to make this too long so won't go into anything else other than the only thing I'm doing right now is AI. I think I read here where someone was doing it or it could have been another group. I just started it last week. I hope you can tolerate my broken up paragraphs, I have lots of neuro problems and have trouble reading one big paragraph so I always write like this. Thane, I have to commend you. You do a great job here with the group. You are a genuinely nice guy. I'm a very good judge of character. LOL Connie On Tue, Jan 19, 2010 at 6:46 AM, malindabross wrote: Thane you are too kind!I am sorry too, if I sounded as if I was scolding.....definately not! God bless ~ Malinda > > >> > > I've been seeing how our group has been morphing lately from one that keeps > > personal chit chat to a minimum and focuses mostly on treating lyme to one that> > includes more personal off topic discussions and less about lyme. So I wanted> > to ask you all, What kind of group do you want? Because i'm not sure we can > > have both.> > >> > > In a group that is mostly lyme information focused there seems to be higher> > quality information shared and new members feel less intimidated to join into > > the discussion. And in a group where we act like old friends and feel free to> > talk about many things non lyme related we find more emotional support, which is> > just as important, but we can come across more cliche-ish, discouraging some new > > members from joining the discussion and asking their questions. I guess I have> > always wanted our group to be a place where sick new members can find informed> > people willing to help and not have to sort through Off Topic posts that exhaust > > their precious little energy. I'm probably not the only one who has noticed> > that we get very few new members asking questions anymore. And that to me is a> > tragedy because there are so many wonderful people here who could offer helpful > > suggestions. And it seems its those new questions from members that spurs the> > very best lyme discussion.> > >> > > I want to reassure you that though I am the moderator of this group, it is > > YOUR group, and its you who choose what you want from it. I am fine with it> > staying the smaller closer nit group we have now that enjoys the freedom of> > talking about a whole variety of issues if thats what you want, but just so > > people understand that its discouraging some new members from joining the> > discussion.> > >> > > I of course still boast we've got the best group on the net! > > > > > > Thane> > >> >> >> >> >> > Tue Jan 12, 2010 8:16 am> >> > Show Message Option> >> > " malindabross " <malindabross@ ...> > > malindabross > > Offline > > Send Email > >>------------------------------------If your post is not about electronic devices used in the treatment of Lyme then please put an OT: in the subject line. ------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Hi Jim, Thanks for nice welcome. Well, unfortunately I have lyme and co's and so does my family. My husband and my daughter have tested positive and my son refuses to be tested. I know he has it he has too many sx. I gave it to them and I feel terrible about that. I live in KY and it's not very prevalent so I'm sure it was transmitted sexually between hubby and I. Not sure who gave it to other though. I know that isn't a proven fact though but I 100% believe that it can be transmitted sexually. I did try to get disability. I tried for 3 years and went before 2 different judges. They both thought I was faking. The last time right before I went in to see the judge, I had an episode where my leg wouldn't work. Couldn't believe it happened then but it did. I had to have help getting in there to be seated. I was so embarrassed and in disbelief that of all the times for this to happen. He just thought it was all an act I guess. I could only wish. LOL At the time I only weighed 103 and looked very sick. I thought that might help a little but no. I guess he thought it was part of the act. Anyway, for my own well being I just had to give up. It was so hard on me for 2 judges to tell me I was faking. That's what they want is for you to give up. We own a business and I am back on the payroll even though I do very little (make out schedule and some taxes). At least, this will give me my quarters worked if I ever file again. I don't ever want to go through that again though. If I can get by without it, I won't. Yes, I so wish I had been on an alternative prior to stopping the abx. It wasn't by choice that I stopped though. My local dr moved and I didn't have anyone to give me the shots. I have since found another great nurse practitioner willing to do it. I chose not to at this time though. Another long winded post. Sorry. Connie Well Hi Connie, You belong if you have Lyme or are here on behalf of a loved one with Lyme, uh and of course you are breathing... :-) You don't need to own a rife machine to be here, just kick back and enjoy the group... WE are all here for each other... Testing positive for Lyme is like winning the Lyme lottery! With that if you wanted, you could get treated by the allopathics as so many will not treat without a positive Lyme test... So Congrats! So many have negative tests and most doctors refuse to treat them for anything, not even their systems... Since you are not working, I hope you have considered or are on SSDI... Social Security Disability Insurance... For many Lymies, this is a lifesaver... The relapse you experienced after coming off of the abx is so very common.. It is always good to be using an alternative protocol along with the abx, then when you stop the abx, the other protocol hopefully will keep the bacterial load down... Don't worry how your writing is, it is easy for me to understand... Actually, I break up my paragraphs also as it is easier for many to read... So now that you have made the " maiden' post, hope to hear more from you.... :-)-- Take care,JimSalt/C, EMEM, MMS ozoneDisclaimer: THERE IS NO MEDICAL ADVICE HERE! This list is the 1st Amendment in action. I am not an expert, I do share my many years of experiences and knowledge I have learned from others, both on group and privately. The things you will find here are for information and research purposes only. I am sharing information I believe in. If you act on ideas found here, you do so at your own risk. Self-help requires intelligence, common sense, and the ability to take responsibility for your own actions. Do not use any ideas found here without consulting a medical professional, unless you are a researcher or health care provider. I've been thinking... Message List Reply | Forward Message #8026 of 8056 < Prev | Next > Re: Re: I've been thinking... " I've been thinking " it's time that I introduce myself and tell you what I think of your group. First of all, I love this group just like it is. It's very caring and close knit and I like that a lot. I've been reading here for a while but since I don't rife I didn't know if I belonged. I was looking into it and haven't given up the possibility at a later time. Anyway, my name is Connie and I'm definitely not new to lyme. I've been sick since 1989 but was dx'd with CFS/FMS. In 2004 I finally found out about lyme and was tested and it was positive. I've been in treatment since early 2005 with abx. I've been unable to work for the most part of the 20 years. I'm much better but still not able to work unfortunately. In Sept.09 I went off my bicillin shots that I had been on for over 2 years and did OK for a couple of months then BAM! I don't want to make this too long so won't go into anything else other than the only thing I'm doing right now is AI. I think I read here where someone was doing it or it could have been another group. I just started it last week. I hope you can tolerate my broken up paragraphs, I have lots of neuro problems and have trouble reading one big paragraph so I always write like this. Thane, I have to commend you. You do a great job here with the group. You are a genuinely nice guy. I'm a very good judge of character. LOL Connie On Tue, Jan 19, 2010 at 6:46 AM, malindabross wrote: Thane you are too kind!I am sorry too, if I sounded as if I was scolding.....definately not! God bless ~ Malinda> > >> > > I've been seeing how our group has been morphing lately from one that keeps > > personal chit chat to a minimum and focuses mostly on treating lyme to one that> > includes more personal off topic discussions and less about lyme. So I wanted> > to ask you all, What kind of group do you want? Because i'm not sure we can > > have both.> > >> > > In a group that is mostly lyme information focused there seems to be higher> > quality information shared and new members feel less intimidated to join into > > the discussion. And in a group where we act like old friends and feel free to> > talk about many things non lyme related we find more emotional support, which is> > just as important, but we can come across more cliche-ish, discouraging some new > > members from joining the discussion and asking their questions. I guess I have> > always wanted our group to be a place where sick new members can find informed> > people willing to help and not have to sort through Off Topic posts that exhaust > > their precious little energy. I'm probably not the only one who has noticed> > that we get very few new members asking questions anymore. And that to me is a> > tragedy because there are so many wonderful people here who could offer helpful > > suggestions. And it seems its those new questions from members that spurs the> > very best lyme discussion.> > >> > > I want to reassure you that though I am the moderator of this group, it is > > YOUR group, and its you who choose what you want from it. I am fine with it> > staying the smaller closer nit group we have now that enjoys the freedom of> > talking about a whole variety of issues if thats what you want, but just so > > people understand that its discouraging some new members from joining the> > discussion.> > >> > > I of course still boast we've got the best group on the net! > > > > > > Thane> > >> >> >> >> >> > Tue Jan 12, 2010 8:16 am> >> > Show Message Option> >> > " malindabross " <malindabross@ ...> > > malindabross > > Offline > > Send Email > >>------------------------------------If your post is not about electronic devices used in the treatment of Lyme then please put an OT: in the subject line. ------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Hi Connie, Wondering if u got an attorney to help u with your disability case? I was denied 2 times and by then I lost my home. Then I got my attorney and happened to get a great judge that was so compassionate. Its also good to have MD back up. Healing Blessings Joyce Thane you are too kind!I am sorry too, if I sounded as if I was scolding.... .definately not! God bless ~ Malinda> > >> > > I've been seeing how our group has been morphing lately from one that keeps > > personal chit chat to a minimum and focuses mostly on treating lyme to one that> > includes more personal off topic discussions and less about lyme. So I wanted> > to ask you all, What kind of group do you want? Because i'm not sure we can > > have both.> > >> > > In a group that is mostly lyme information focused there seems to be higher> > quality information shared and new members feel less intimidated to join into > > the discussion. And in a group where we act like old friends and feel free to> > talk about many things non lyme related we find more emotional support, which is> > just as important, but we can come across more cliche-ish, discouraging some new > > members from joining the discussion and asking their questions. I guess I have> > always wanted our group to be a place where sick new members can find informed> > people willing to help and not have to sort through Off Topic posts that exhaust > > their precious little energy. I'm probably not the only one who has noticed> > that we get very few new members asking questions anymore. And that to me is a> > tragedy because there are so many wonderful people here who could offer helpful > > suggestions. And it seems its those new questions from members that spurs the> > very best lyme discussion.> > >> > > I want to reassure you that though I am the moderator of this group, it is > > YOUR group, and its you who choose what you want from it. I am fine with it> > staying the smaller closer nit group we have now that enjoys the freedom of> > talking about a whole variety of issues if thats what you want, but just so > > people understand that its discouraging some new members from joining the> > discussion.> > >> > > I of course still boast we've got the best group on the net! > > > > > > Thane> > >> >> >> >> >> > Tue Jan 12, 2010 8:16 am> >> > Show Message Option> >> > "malindabross" <malindabross@ ...> > > malindabross > > Offline > > Send Email > >>------------ --------- --------- ------If your post is not about electronic devices used in the treatment of Lyme then please put an OT: in the subject line. ------------ --------- --------- - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Joyce, I'm so sorry you ended up losing your home. That is so sad. Unfortuntely, it happens all too often before SSDI is approved. Glad you finally got approved. Yes, I had an attorney from the beginning. I also had my PCP and LLMD as backup. They had my medical records, ect. Neither judge I had was the least bit compassionate. I honestly think it had something to do with us owning a business even though it isn't supposed to be a factor. It's a corporation and the first one asked me about it and I had to tell him I'm the VP. That should have nothing to do with it. It's in name only and I really am able to contribute very little to the business. The second one asked me about our business, too. Income isn't a factor when applying SSDI. Oh well, that's behind me for now. Hopefully the business will be able to support us with the economy the way it is. Connie Hi Connie, Wondering if u got an attorney to help u with your disability case? I was denied 2 times and by then I lost my home. Then I got my attorney and happened to get a great judge that was so compassionate. Its also good to have MD back up. Healing Blessings Joyce Thane you are too kind!I am sorry too, if I sounded as if I was scolding.... .definately not! God bless ~ Malinda> > >> > > I've been seeing how our group has been morphing lately from one that keeps > > personal chit chat to a minimum and focuses mostly on treating lyme to one that> > includes more personal off topic discussions and less about lyme. So I wanted> > to ask you all, What kind of group do you want? Because i'm not sure we can > > have both.> > >> > > In a group that is mostly lyme information focused there seems to be higher> > quality information shared and new members feel less intimidated to join into > > the discussion. And in a group where we act like old friends and feel free to> > talk about many things non lyme related we find more emotional support, which is> > just as important, but we can come across more cliche-ish, discouraging some new > > members from joining the discussion and asking their questions. I guess I have> > always wanted our group to be a place where sick new members can find informed> > people willing to help and not have to sort through Off Topic posts that exhaust > > their precious little energy. I'm probably not the only one who has noticed> > that we get very few new members asking questions anymore. And that to me is a> > tragedy because there are so many wonderful people here who could offer helpful > > suggestions. And it seems its those new questions from members that spurs the> > very best lyme discussion.> > >> > > I want to reassure you that though I am the moderator of this group, it is > > YOUR group, and its you who choose what you want from it. I am fine with it> > staying the smaller closer nit group we have now that enjoys the freedom of> > talking about a whole variety of issues if thats what you want, but just so > > people understand that its discouraging some new members from joining the> > discussion.> > >> > > I of course still boast we've got the best group on the net! > > > > > > Thane> > >> >> >> >> >> > Tue Jan 12, 2010 8:16 am> >> > Show Message Option> >> > " malindabross " <malindabross@ ...> > > malindabross > > Offline > > Send Email > >>------------ --------- --------- ------If your post is not about electronic devices used in the treatment of Lyme then please put an OT: in the subject line. ------------ --------- --------- - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Did you have an attorney? And plenty of medical records to document? Or did you do it on your own? I got on disability 7 years ago with a Fibromyalgia diagnosis – was denied twice, got a lawyer, went before the judge and was approved. The attorney cost money, but only when you win and they pay the attorney first and give you the rest. It’s money never seen by you so you don’t even have to worry about it. If you didn’t have an attorney, get one. It’s much easier. Thanks! From: Lyme_and_Rife [mailto:Lyme_and_Rife ] On Behalf Of Connie Sent: Thursday, January 21, 2010 8:15 AM To: Lyme_and_Rife Subject: Re: RE: I've been thinking.. Hi Jim, Thanks for nice welcome. Well, unfortunately I have lyme and co's and so does my family. My husband and my daughter have tested positive and my son refuses to be tested. I know he has it he has too many sx. I gave it to them and I feel terrible about that. I live in KY and it's not very prevalent so I'm sure it was transmitted sexually between hubby and I. Not sure who gave it to other though. I know that isn't a proven fact though but I 100% believe that it can be transmitted sexually. I did try to get disability. I tried for 3 years and went before 2 different judges. They both thought I was faking. The last time right before I went in to see the judge, I had an episode where my leg wouldn't work. Couldn't believe it happened then but it did. I had to have help getting in there to be seated. I was so embarrassed and in disbelief that of all the times for this to happen. He just thought it was all an act I guess. I could only wish. LOL At the time I only weighed 103 and looked very sick. I thought that might help a little but no. I guess he thought it was part of the act. Anyway, for my own well being I just had to give up. It was so hard on me for 2 judges to tell me I was faking. That's what they want is for you to give up. We own a business and I am back on the payroll even though I do very little (make out schedule and some taxes). At least, this will give me my quarters worked if I ever file again. I don't ever want to go through that again though. If I can get by without it, I won't. Yes, I so wish I had been on an alternative prior to stopping the abx. It wasn't by choice that I stopped though. My local dr moved and I didn't have anyone to give me the shots. I have since found another great nurse practitioner willing to do it. I chose not to at this time though. Another long winded post. Sorry. Connie On Tue, Jan 19, 2010 at 8:57 PM, Jim in Jax <jimjax2gmail> wrote: Well Hi Connie, You belong if you have Lyme or are here on behalf of a loved one with Lyme, uh and of course you are breathing... :-) You don't need to own a rife machine to be here, just kick back and enjoy the group... WE are all here for each other... Testing positive for Lyme is like winning the Lyme lottery! With that if you wanted, you could get treated by the allopathics as so many will not treat without a positive Lyme test... So Congrats! So many have negative tests and most doctors refuse to treat them for anything, not even their systems... Since you are not working, I hope you have considered or are on SSDI... Social Security Disability Insurance... For many Lymies, this is a lifesaver... The relapse you experienced after coming off of the abx is so very common.. It is always good to be using an alternative protocol along with the abx, then when you stop the abx, the other protocol hopefully will keep the bacterial load down... Don't worry how your writing is, it is easy for me to understand... Actually, I break up my paragraphs also as it is easier for many to read... So now that you have made the " maiden' post, hope to hear more from you.... :-) -- Take care, Jim Salt/C, EMEM, MMS ozone Disclaimer: THERE IS NO MEDICAL ADVICE HERE! This list is the 1st Amendment in action. I am not an expert, I do share my many years of experiences and knowledge I have learned from others, both on group and privately. The things you will find here are for information and research purposes only. I am sharing information I believe in. If you act on ideas found here, you do so at your own risk. Self-help requires intelligence, common sense, and the ability to take responsibility for your own actions. Do not use any ideas found here without consulting a medical professional, unless you are a researcher or health care provider. I've been thinking... Message List Reply | Forward Message #8026 of 8056 < Prev | Next > Re: Re: I've been thinking... " I've been thinking " it's time that I introduce myself and tell you what I think of your group. First of all, I love this group just like it is. It's very caring and close knit and I like that a lot. I've been reading here for a while but since I don't rife I didn't know if I belonged. I was looking into it and haven't given up the possibility at a later time. Anyway, my name is Connie and I'm definitely not new to lyme. I've been sick since 1989 but was dx'd with CFS/FMS. In 2004 I finally found out about lyme and was tested and it was positive. I've been in treatment since early 2005 with abx. I've been unable to work for the most part of the 20 years. I'm much better but still not able to work unfortunately. In Sept.09 I went off my bicillin shots that I had been on for over 2 years and did OK for a couple of months then BAM! I don't want to make this too long so won't go into anything else other than the only thing I'm doing right now is AI. I think I read here where someone was doing it or it could have been another group. I just started it last week. I hope you can tolerate my broken up paragraphs, I have lots of neuro problems and have trouble reading one big paragraph so I always write like this. Thane, I have to commend you. You do a great job here with the group. You are a genuinely nice guy. I'm a very good judge of character. LOL Connie Thane you are too kind! I am sorry too, if I sounded as if I was scolding.....definately not! God bless ~ Malinda > > > > > > I've been seeing how our group has been morphing lately from one that keeps > > personal chit chat to a minimum and focuses mostly on treating lyme to one that > > includes more personal off topic discussions and less about lyme. So I wanted > > to ask you all, What kind of group do you want? Because i'm not sure we can > > have both. > > > > > > In a group that is mostly lyme information focused there seems to be higher > > quality information shared and new members feel less intimidated to join into > > the discussion. And in a group where we act like old friends and feel free to > > talk about many things non lyme related we find more emotional support, which is > > just as important, but we can come across more cliche-ish, discouraging some new > > members from joining the discussion and asking their questions. I guess I have > > always wanted our group to be a place where sick new members can find informed > > people willing to help and not have to sort through Off Topic posts that exhaust > > their precious little energy. I'm probably not the only one who has noticed > > that we get very few new members asking questions anymore. And that to me is a > > tragedy because there are so many wonderful people here who could offer helpful > > suggestions. And it seems its those new questions from members that spurs the > > very best lyme discussion. > > > > > > I want to reassure you that though I am the moderator of this group, it is > > YOUR group, and its you who choose what you want from it. I am fine with it > > staying the smaller closer nit group we have now that enjoys the freedom of > > talking about a whole variety of issues if thats what you want, but just so > > people understand that its discouraging some new members from joining the > > discussion. > > > > > > I of course still boast we've got the best group on the net! > > > > > > Thane > > > > > > > > > > > > > Tue Jan 12, 2010 8:16 am > > > > Show Message Option > > > > " malindabross " <malindabross@ ...> > > malindabross > > Offline > > Send Email > > > ------------------------------------ If your post is not about electronic devices used in the treatment of Lyme then please put an OT: in the subject line. ------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Ignore my post! I had started it earlier and I guess didn’t send it so I just did… That’s just plain wrong that they denied you. Your attorney didn’t fight hard enough or something! Just plain wrong… From: Lyme_and_Rife [mailto:Lyme_and_Rife ] On Behalf Of Connie Sent: Thursday, January 21, 2010 10:33 AM To: Lyme_and_Rife Subject: Re: RE: I've been thinking.. Joyce, I'm so sorry you ended up losing your home. That is so sad. Unfortuntely, it happens all too often before SSDI is approved. Glad you finally got approved. Yes, I had an attorney from the beginning. I also had my PCP and LLMD as backup. They had my medical records, ect. Neither judge I had was the least bit compassionate. I honestly think it had something to do with us owning a business even though it isn't supposed to be a factor. It's a corporation and the first one asked me about it and I had to tell him I'm the VP. That should have nothing to do with it. It's in name only and I really am able to contribute very little to the business. The second one asked me about our business, too. Income isn't a factor when applying SSDI. Oh well, that's behind me for now. Hopefully the business will be able to support us with the economy the way it is. Connie On Thu, Jan 21, 2010 at 12:06 PM, joyce la fleur <loveandlight1111> wrote: Hi Connie, Wondering if u got an attorney to help u with your disability case? I was denied 2 times and by then I lost my home. Then I got my attorney and happened to get a great judge that was so compassionate. Its also good to have MD back up. Healing Blessings Joyce Thane you are too kind! I am sorry too, if I sounded as if I was scolding.... .definately not! God bless ~ Malinda > > > > > > I've been seeing how our group has been morphing lately from one that keeps > > personal chit chat to a minimum and focuses mostly on treating lyme to one that > > includes more personal off topic discussions and less about lyme. So I wanted > > to ask you all, What kind of group do you want? Because i'm not sure we can > > have both. > > > > > > In a group that is mostly lyme information focused there seems to be higher > > quality information shared and new members feel less intimidated to join into > > the discussion. And in a group where we act like old friends and feel free to > > talk about many things non lyme related we find more emotional support, which is > > just as important, but we can come across more cliche-ish, discouraging some new > > members from joining the discussion and asking their questions. I guess I have > > always wanted our group to be a place where sick new members can find informed > > people willing to help and not have to sort through Off Topic posts that exhaust > > their precious little energy. I'm probably not the only one who has noticed > > that we get very few new members asking questions anymore. And that to me is a > > tragedy because there are so many wonderful people here who could offer helpful > > suggestions. And it seems its those new questions from members that spurs the > > very best lyme discussion. > > > > > > I want to reassure you that though I am the moderator of this group, it is > > YOUR group, and its you who choose what you want from it. I am fine with it > > staying the smaller closer nit group we have now that enjoys the freedom of > > talking about a whole variety of issues if thats what you want, but just so > > people understand that its discouraging some new members from joining the > > discussion. > > > > > > I of course still boast we've got the best group on the net! > > > > > > Thane > > > > > > > > > > > > > Tue Jan 12, 2010 8:16 am > > > > Show Message Option > > > > " malindabross " <malindabross@ ...> > > malindabross > > Offline > > Send Email > > > ------------ --------- --------- ------ If your post is not about electronic devices used in the treatment of Lyme then please put an OT: in the subject line. ------------ --------- --------- - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Thanks Connie. Hopefully things will work out for you.Its hard enough being ill but dealing with the system is hard. Blessings to everything working out for you. Joyce Thane you are too kind!I am sorry too, if I sounded as if I was scolding.... .definately not! God bless ~ Malinda> > >> > > I've been seeing how our group has been morphing lately from one that keeps > > personal chit chat to a minimum and focuses mostly on treating lyme to one that> > includes more personal off topic discussions and less about lyme. So I wanted> > to ask you all, What kind of group do you want? Because i'm not sure we can > > have both.> > >> > > In a group that is mostly lyme information focused there seems to be higher> > quality information shared and new members feel less intimidated to join into > > the discussion. And in a group where we act like old friends and feel free to> > talk about many things non lyme related we find more emotional support, which is> > just as important, but we can come across more cliche-ish, discouraging some new > > members from joining the discussion and asking their questions. I guess I have> > always wanted our group to be a place where sick new members can find informed> > people willing to help and not have to sort through Off Topic posts that exhaust > > their precious little energy. I'm probably not the only one who has noticed> > that we get very few new members asking questions anymore. And that to me is a> > tragedy because there are so many wonderful people here who could offer helpful > > suggestions. And it seems its those new questions from members that spurs the> > very best lyme discussion.> > >> > > I want to reassure you that though I am the moderator of this group, it is > > YOUR group, and its you who choose what you want from it. I am fine with it> > staying the smaller closer nit group we have now that enjoys the freedom of> > talking about a whole variety of issues if thats what you want, but just so > > people understand that its discouraging some new members from joining the> > discussion.> > >> > > I of course still boast we've got the best group on the net! > > > > > > Thane> > >> >> >> >> >> > Tue Jan 12, 2010 8:16 am> >> > Show Message Option> >> > "malindabross" <malindabross@ ...> > > malindabross > > Offline > > Send Email > >>------------ --------- --------- ------If your post is not about electronic devices used in the treatment of Lyme then please put an OT: in the subject line. ------------ --------- --------- - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 oh gosh joyce, losing your home......heartbreaking. you have gone through a lot, and i'm so glad that yu have found something that is making you better. xoxoxsusie Hi Connie, Wondering if u got an attorney to help u with your disability case? I was denied 2 times and by then I lost my home. Then I got my attorney and happened to get a great judge that was so compassionate. Its also good to have MD back up. Healing Blessings Joyce --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Thanks Susie, It was extremely hard for me losing my job,house,home and many friends.I worked very hard to buy my home on my own.I was a single divorced parent of 2. I am grateful to have not been homeless as I am in gov housing. Lots of things to be grateful for. I have learned and grown so much through this illness. I am also grateful to all the conscious caring lymies I have met here,facebook and in other groups. In gratefulness Joyce Hi Connie, Wondering if u got an attorney to help u with your disability case? I was denied 2 times and by then I lost my home. Then I got my attorney and happened to get a great judge that was so compassionate. Its also good to have MD back up. Healing Blessings Joyce --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 One more thought on the SSDI . I think it's better to apply under CFIDS/FIBRO. Because as we all know, Lyme can be cured with two weeks of abx. ;-)Jim, no offense on the attorney thing. I really appreciate your wisdom. Hi Jim, Thanks for nice welcome. Well, unfortunately I have lyme and co's and so does my family. My husband and my daughter have tested positive and my son refuses to be tested. I know he has it he has too many sx. I gave it to them and I feel terrible about that. I live in KY and it's not very prevalent so I'm sure it was transmitted sexually between hubby and I. Not sure who gave it to other though. I know that isn't a proven fact though but I 100% believe that it can be transmitted sexually. I did try to get disability. I tried for 3 years and went before 2 different judges. They both thought I was faking. The last time right before I went in to see the judge, I had an episode where my leg wouldn't work. Couldn't believe it happened then but it did. I had to have help getting in there to be seated. I was so embarrassed and in disbelief that of all the times for this to happen. He just thought it was all an act I guess. I could only wish. LOL At the time I only weighed 103 and looked very sick. I thought that might help a little but no. I guess he thought it was part of the act. Anyway, for my own well being I just had to give up. It was so hard on me for 2 judges to tell me I was faking. That's what they want is for you to give up. We own a business and I am back on the payroll even though I do very little (make out schedule and some taxes). At least, this will give me my quarters worked if I ever file again. I don't ever want to go through that again though. If I can get by without it, I won't. Yes, I so wish I had been on an alternative prior to stopping the abx. It wasn't by choice that I stopped though. My local dr moved and I didn't have anyone to give me the shots. I have since found another great nurse practitioner willing to do it. I chose not to at this time though. Another long winded post. Sorry. Connie Well Hi Connie, You belong if you have Lyme or are here on behalf of a loved one with Lyme, uh and of course you are breathing... :-) You don't need to own a rife machine to be here, just kick back and enjoy the group... WE are all here for each other... Testing positive for Lyme is like winning the Lyme lottery! With that if you wanted, you could get treated by the allopathics as so many will not treat without a positive Lyme test... So Congrats! So many have negative tests and most doctors refuse to treat them for anything, not even their systems... Since you are not working, I hope you have considered or are on SSDI... Social Security Disability Insurance... For many Lymies, this is a lifesaver... The relapse you experienced after coming off of the abx is so very common.. It is always good to be using an alternative protocol along with the abx, then when you stop the abx, the other protocol hopefully will keep the bacterial load down... Don't worry how your writing is, it is easy for me to understand... Actually, I break up my paragraphs also as it is easier for many to read... So now that you have made the " maiden' post, hope to hear more from you.... :-)-- Take care,JimSalt/C, EMEM, MMS ozoneDisclaimer: THERE IS NO MEDICAL ADVICE HERE! This list is the 1st Amendment in action. I am not an expert, I do share my many years of experiences and knowledge I have learned from others, both on group and privately. The things you will find here are for information and research purposes only. I am sharing information I believe in. If you act on ideas found here, you do so at your own risk. Self-help requires intelligence, common sense, and the ability to take responsibility for your own actions. Do not use any ideas found here without consulting a medical professional, unless you are a researcher or health care provider. I've been thinking... Message List Reply | Forward Message #8026 of 8056 < Prev | Next > Re: Re: I've been thinking... " I've been thinking " it's time that I introduce myself and tell you what I think of your group. First of all, I love this group just like it is. It's very caring and close knit and I like that a lot. I've been reading here for a while but since I don't rife I didn't know if I belonged. I was looking into it and haven't given up the possibility at a later time. Anyway, my name is Connie and I'm definitely not new to lyme. I've been sick since 1989 but was dx'd with CFS/FMS. In 2004 I finally found out about lyme and was tested and it was positive. I've been in treatment since early 2005 with abx. I've been unable to work for the most part of the 20 years. I'm much better but still not able to work unfortunately. In Sept.09 I went off my bicillin shots that I had been on for over 2 years and did OK for a couple of months then BAM! I don't want to make this too long so won't go into anything else other than the only thing I'm doing right now is AI. I think I read here where someone was doing it or it could have been another group. I just started it last week. I hope you can tolerate my broken up paragraphs, I have lots of neuro problems and have trouble reading one big paragraph so I always write like this. Thane, I have to commend you. You do a great job here with the group. You are a genuinely nice guy. I'm a very good judge of character. LOL Connie On Tue, Jan 19, 2010 at 6:46 AM, malindabross wrote: Thane you are too kind!I am sorry too, if I sounded as if I was scolding.....definately not! God bless ~ Malinda> > >> > > I've been seeing how our group has been morphing lately from one that keeps > > personal chit chat to a minimum and focuses mostly on treating lyme to one that> > includes more personal off topic discussions and less about lyme. So I wanted> > to ask you all, What kind of group do you want? Because i'm not sure we can > > have both.> > >> > > In a group that is mostly lyme information focused there seems to be higher> > quality information shared and new members feel less intimidated to join into > > the discussion. And in a group where we act like old friends and feel free to> > talk about many things non lyme related we find more emotional support, which is> > just as important, but we can come across more cliche-ish, discouraging some new > > members from joining the discussion and asking their questions. I guess I have> > always wanted our group to be a place where sick new members can find informed> > people willing to help and not have to sort through Off Topic posts that exhaust > > their precious little energy. I'm probably not the only one who has noticed> > that we get very few new members asking questions anymore. And that to me is a> > tragedy because there are so many wonderful people here who could offer helpful > > suggestions. And it seems its those new questions from members that spurs the> > very best lyme discussion.> > >> > > I want to reassure you that though I am the moderator of this group, it is > > YOUR group, and its you who choose what you want from it. I am fine with it> > staying the smaller closer nit group we have now that enjoys the freedom of> > talking about a whole variety of issues if thats what you want, but just so > > people understand that its discouraging some new members from joining the> > discussion.> > >> > > I of course still boast we've got the best group on the net! > > > > > > Thane> > >> >> >> >> >> > Tue Jan 12, 2010 8:16 am> >> > Show Message Option> >> > " malindabross " <malindabross@ ...> > > malindabross > > Offline > > Send Email > >>------------------------------------If your post is not about electronic devices used in the treatment of Lyme then please put an OT: in the subject line. ------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 I think you are right . I should have stuck with CFS/FMS. I was dx'd with those for 15 years before I knew I had lyme. I've wondered if that would have made a difference. Connie One more thought on the SSDI . I think it's better to apply under CFIDS/FIBRO. Because as we all know, Lyme can be cured with two weeks of abx. ;-)Jim, no offense on the attorney thing. I really appreciate your wisdom. Hi Jim, Thanks for nice welcome. Well, unfortunately I have lyme and co's and so does my family. My husband and my daughter have tested positive and my son refuses to be tested. I know he has it he has too many sx. I gave it to them and I feel terrible about that. I live in KY and it's not very prevalent so I'm sure it was transmitted sexually between hubby and I. Not sure who gave it to other though. I know that isn't a proven fact though but I 100% believe that it can be transmitted sexually. I did try to get disability. I tried for 3 years and went before 2 different judges. They both thought I was faking. The last time right before I went in to see the judge, I had an episode where my leg wouldn't work. Couldn't believe it happened then but it did. I had to have help getting in there to be seated. I was so embarrassed and in disbelief that of all the times for this to happen. He just thought it was all an act I guess. I could only wish. LOL At the time I only weighed 103 and looked very sick. I thought that might help a little but no. I guess he thought it was part of the act. Anyway, for my own well being I just had to give up. It was so hard on me for 2 judges to tell me I was faking. That's what they want is for you to give up. We own a business and I am back on the payroll even though I do very little (make out schedule and some taxes). At least, this will give me my quarters worked if I ever file again. I don't ever want to go through that again though. If I can get by without it, I won't. Yes, I so wish I had been on an alternative prior to stopping the abx. It wasn't by choice that I stopped though. My local dr moved and I didn't have anyone to give me the shots. I have since found another great nurse practitioner willing to do it. I chose not to at this time though. Another long winded post. Sorry. Connie Well Hi Connie, You belong if you have Lyme or are here on behalf of a loved one with Lyme, uh and of course you are breathing... :-) You don't need to own a rife machine to be here, just kick back and enjoy the group... WE are all here for each other... Testing positive for Lyme is like winning the Lyme lottery! With that if you wanted, you could get treated by the allopathics as so many will not treat without a positive Lyme test... So Congrats! So many have negative tests and most doctors refuse to treat them for anything, not even their systems... Since you are not working, I hope you have considered or are on SSDI... Social Security Disability Insurance... For many Lymies, this is a lifesaver... The relapse you experienced after coming off of the abx is so very common.. It is always good to be using an alternative protocol along with the abx, then when you stop the abx, the other protocol hopefully will keep the bacterial load down... Don't worry how your writing is, it is easy for me to understand... Actually, I break up my paragraphs also as it is easier for many to read... So now that you have made the " maiden' post, hope to hear more from you.... :-)-- Take care,JimSalt/C, EMEM, MMS ozoneDisclaimer: THERE IS NO MEDICAL ADVICE HERE! This list is the 1st Amendment in action. I am not an expert, I do share my many years of experiences and knowledge I have learned from others, both on group and privately. The things you will find here are for information and research purposes only. I am sharing information I believe in. If you act on ideas found here, you do so at your own risk. Self-help requires intelligence, common sense, and the ability to take responsibility for your own actions. Do not use any ideas found here without consulting a medical professional, unless you are a researcher or health care provider. I've been thinking... Message List Reply | Forward Message #8026 of 8056 < Prev | Next > Re: Re: I've been thinking... " I've been thinking " it's time that I introduce myself and tell you what I think of your group. First of all, I love this group just like it is. It's very caring and close knit and I like that a lot. I've been reading here for a while but since I don't rife I didn't know if I belonged. I was looking into it and haven't given up the possibility at a later time. Anyway, my name is Connie and I'm definitely not new to lyme. I've been sick since 1989 but was dx'd with CFS/FMS. In 2004 I finally found out about lyme and was tested and it was positive. I've been in treatment since early 2005 with abx. I've been unable to work for the most part of the 20 years. I'm much better but still not able to work unfortunately. In Sept.09 I went off my bicillin shots that I had been on for over 2 years and did OK for a couple of months then BAM! I don't want to make this too long so won't go into anything else other than the only thing I'm doing right now is AI. I think I read here where someone was doing it or it could have been another group. I just started it last week. I hope you can tolerate my broken up paragraphs, I have lots of neuro problems and have trouble reading one big paragraph so I always write like this. Thane, I have to commend you. You do a great job here with the group. You are a genuinely nice guy. I'm a very good judge of character. LOL Connie On Tue, Jan 19, 2010 at 6:46 AM, malindabross wrote: Thane you are too kind!I am sorry too, if I sounded as if I was scolding.....definately not! God bless ~ Malinda> > >> > > I've been seeing how our group has been morphing lately from one that keeps > > personal chit chat to a minimum and focuses mostly on treating lyme to one that> > includes more personal off topic discussions and less about lyme. So I wanted> > to ask you all, What kind of group do you want? Because i'm not sure we can > > have both.> > >> > > In a group that is mostly lyme information focused there seems to be higher> > quality information shared and new members feel less intimidated to join into > > the discussion. And in a group where we act like old friends and feel free to> > talk about many things non lyme related we find more emotional support, which is> > just as important, but we can come across more cliche-ish, discouraging some new > > members from joining the discussion and asking their questions. I guess I have> > always wanted our group to be a place where sick new members can find informed> > people willing to help and not have to sort through Off Topic posts that exhaust > > their precious little energy. I'm probably not the only one who has noticed> > that we get very few new members asking questions anymore. And that to me is a> > tragedy because there are so many wonderful people here who could offer helpful > > suggestions. And it seems its those new questions from members that spurs the> > very best lyme discussion.> > >> > > I want to reassure you that though I am the moderator of this group, it is > > YOUR group, and its you who choose what you want from it. I am fine with it> > staying the smaller closer nit group we have now that enjoys the freedom of> > talking about a whole variety of issues if thats what you want, but just so > > people understand that its discouraging some new members from joining the> > discussion.> > >> > > I of course still boast we've got the best group on the net! > > > > > > Thane> > >> >> >> >> >> > Tue Jan 12, 2010 8:16 am> >> > Show Message Option> >> > " malindabross " <malindabross@ ...> > > malindabross > > Offline > > Send Email > >>------------------------------------If your post is not about electronic devices used in the treatment of Lyme then please put an OT: in the subject line. ------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Actually ,You forgot to mention there is no such thing a chronic Lyme.... :-)I do agree with you if CFIDS/FIBRO is one of the " accepted " illnesses, I always tell others Lyme may be a problem, was a few years ago... I won my case 18 years ago with no dx of any illness! Only symptoms that kept me from working.. So I am not up to date on what the accepted illnesses are... Back then my attorney begged me to get a dx of depression as he said everyone gets approved... I said I don't have depression, he said don't worry, our doctor will give you a depression dx... I said I didn't want to lie... :-) Gosh, I was so naive back then, today I would grab any dx my attorney felt would help me win after hearing the problems so many others have... I think I was very lucky with my case back then, refusing to accept any other dx, went with my symptoms only, refused to lie and won.. I remember though my attorney was not pleased with my decision, but I won and he got his cut anyway... I hear of so many who didn't have a positive outcome... Absolutely no offense taken, I feel many have good things to add on a number of topics... The better the info for those who need it, all the better for everyone.. And with SSDI, I want to see others win as I know many may not survive without it. I do appreciate you wisdom also... ;-) Jim Re: RE: I've been thinking.. One more thought on the SSDI . I think it's better to apply under CFIDS/FIBRO. Because as we all know, Lyme can be cured with two weeks of abx. ;-) Jim, no offense on the attorney thing. I really appreciate your wisdom.On Thu, Jan 21, 2010 at 8:15 AM, Connie wrote: Hi Jim, Thanks for nice welcome. Well, unfortunately I have lyme and co's and so does my family. My husband and my daughter have tested positive and my son refuses to be tested. I know he has it he has too many sx. I gave it to them and I feel terrible aboutthat. I live in KY and it's not very prevalent so I'm sure it was transmitted sexually between hubby and I. Not sure who gave it to other though. I know that isn't a proven fact though but I 100% believe that it can be transmitted sexually. I did try to get disability. I tried for 3 years and went before 2 different judges. They both thought I was faking. The last time right before I went in to see the judge, I had an episode where my leg wouldn't work. Couldn't believe it happened then but it did. I hadto have help getting in there to be seated. I was so embarrassed and in disbelief that of all the times for this to happen. He just thought it was all an act I guess. I could only wish. LOL At the time I only weighed 103 and looked very sick. I thought that might help a little but no. I guess he thought it was part of the act. Anyway, for my own well being I just had to give up. It was sohard on me for 2 judges to tell me I was faking. That's what they want is for you to give up. We own a business and I am back on the payroll even though I do very little (make out schedule and some taxes). At least, this will give me my quarters worked if I ever file again. I don't ever want to go through that again though. If I can get by without it, I won't. Yes, I so wish I had been on an alternative prior to stopping the abx. It wasn't by choice that I stopped though. My local dr moved and I didn't have anyone to give me the shots. I have since found another great nurse practitioner willing to do it. I chose not toat this time though. Another long winded post. Sorry. Connie On Tue, Jan 19, 2010 at 8:57 PM, Jim in Jax wrote: Well Hi Connie, You belong if you have Lyme or are here on behalf of a loved one with Lyme, uh and of course you are breathing... :-)You don't need to own a rife machine to be here, just kick back and enjoy the group... WE are all here for each other... Testing positive for Lyme is like winning the Lyme lottery! With that if you wanted, you could get treated by the allopathics as so many will not treat without a positive Lyme test... So Congrats! So many have negative tests and most doctors refuse to treat them for anything, not even their systems... Since you are not working, I hope you have considered or are on SSDI... Social Security Disability Insurance... For many Lymies, this is a lifesaver... The relapse you experienced after coming off of the abx is so very common.. It is always good to be using an alternative protocol along with the abx, then when you stop the abx, the other protocol hopefully will keep the bacterial load down... Don't worry how your writing is, it is easy for me to understand... Actually, I break up my paragraphs also as itis easier for many to read... So now that you have made the " maiden' post, hope to hear more from you.... :-)-- Take care,JimSalt/C, EMEM, MMS ozone Disclaimer: THERE IS NO MEDICAL ADVICE HERE!This list is the 1st Amendment in action. I am not an expert, I do share my many years of experiences and knowledge I have learned from others, both on group and privately. The things you will find here are for information and research purposes only. I am sharing information I believe in. If you act on ideas found here, you do so at your own risk. Self-help requires intelligence, common sense, and the ability to take responsibility for your own actions. Do not use any ideas found here without consulting a medical professional, unless you are a researcher or health care provider. I've been thinking... Message List Reply | Forward Message #8026 of 8056 < Prev | Next > Re: Re: I've been thinking... " I've been thinking " it's time that I introduce myself and tell you what I think of your group. First of all, I love this group just like it is. It's very caring and close knit and I like that a lot. I've been reading here for a while but since I don't rife I didn't know if I belonged. I was looking into it and haven't given up the possibility at a later time. Anyway, my name is Connie and I'm definitely not new to lyme. I've been sick since 1989 but was dx'd with CFS/FMS. In 2004 I finally found out about lyme and was tested and it was positive. I've been in treatment since early 2005 with abx. I've been unable to work for the most part of the 20 years. I'm much better but still not able to work unfortunately. In Sept.09 I went off my bicillin shots that I had been on for over 2 years and did OK for a couple of months then BAM! I don't want to make this too long so won't go into anything else other than the only thing I'm doing right now is AI. I think I read here where someone was doing it or it could have been another group. I just started it last week. I hope you can tolerate my broken up paragraphs, I have lots of neuro problems and have trouble reading one big paragraph so I always write like this. Thane, I have to commend you. You do a great job here with the group. You are a genuinely nice guy. I'm a very good judge of character. LOL Connie On Tue, Jan 19, 2010 at 6:46 AM, malindabross wrote: Thane you are too kind!I am sorry too, if I sounded as if I was scolding.....definately not! God bless ~ Malinda > > >> > > I've been seeing how our group has been morphing lately from one that keeps > > personal chit chat to a minimum and focuses mostly on treating lyme to one that> > includes more personal off topic discussions and less about lyme. So I wanted> > to ask you all, What kind of group do you want? Because i'm not sure we can > > have both.> > >> > > In a group that is mostly lyme information focused there seems to be higher> > quality information shared and new members feel less intimidated to join into > > the discussion. And in a group where we act like old friends and feel free to> > talk about many things non lyme related we find more emotional support, which is> > just as important, but we can come across more cliche-ish, discouraging some new > > members from joining the discussion and asking their questions. I guess I have> > always wanted our group to be a place where sick new members can find informed> > people willing to help and not have to sort through Off Topic posts that exhaust > > their precious little energy. I'm probably not the only one who has noticed> > that we get very few new members asking questions anymore. And that to me is a> > tragedy because there are so many wonderful people here who could offer helpful > > suggestions. And it seems its those new questions from members that spurs the> > very best lyme discussion.> > >> > > I want to reassure you that though I am the moderator of this group, it is > > YOUR group, and its you who choose what you want from it. I am fine with it> > staying the smaller closer nit group we have now that enjoys the freedom of> > talking about a whole variety of issues if thats what you want, but just so > > people understand that its discouraging some new members from joining the> > discussion.> > >> > > I of course still boast we've got the best group on the net! > > > > > > Thane> > >> >> >> >> >> > Tue Jan 12, 2010 8:16 am> >> > Show Message Option> >> > " malindabross " <malindabross@ ...> > > malindabross > > Offline > > Send Email > >>------------------------------------If your post is not about electronic devices used in the treatment of Lyme then please put an OT: in the subject line. ------------------------------- Quote Link to comment Share on other sites More sharing options...
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