Guest guest Posted October 24, 1999 Report Share Posted October 24, 1999 In a message dated 10/24/99 5:13:50 PM, elsbeth@... writes: << Relatively speaking, I'm a newcomer to LD and I would be happy to work with anybody or group that's already organized or willing to start up something fresh. Footwork for me would be difficult simply because I live in California.>> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Hi beth I too am new to Lyme as well, but I would be happy to help you out any way I can! Let me know how I can be of service! Jane (CT home of Lyme) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1999 Report Share Posted October 24, 1999 My opinion on Steere is that he does have Lyme and it affects his brain, causing him to be a megalomaniac. If Steere didn't or doesn't think of something, then of course it cannot possibly be true. Think about it. Even in The Widening Circle, the author relates how the military physician told Steere he had good results using antibiotics with the military personnel who had Lyme. Steere dismisses the whole thing stating something to the effect that " he has tried antibiotics, and they didn't work " , of course we know he probably used for 10-14 days and who knows what antibiotic he tried! I would love to find out who the military physician was who used abx and found them to be working to make the military personnel well, when Lyme caught at onset. And, I'd love to find out if he does treat Lyme in private practice now, assuming he was not career military. He may have been career and this is moot, but I sure would like to get his take on Steere during the beginning of the investigation of the mysterious illness re-named Lyme Disease due to the community of Old Lyme CT having so many people sick with the disease. All these years, Steere has steadfastly refused to accept the scientific evidence published and available to read and only accepts his own " ideas " and worn out mantra, of over diagnosed and over treated. For a supposedly intelligent man to ignore scientific evidence and repeat his own mantra that does not have scientific basis, is simply stupid and causing great harm to so many people. I know some large portion of physicians are egocentric but this takes the cake. I understand he has a forceful personality and speaks well and there have been people like him throughout time who have persuaded others to folly, even to causing great harm to others. As we know, many but not all physician's do not like changes, and it's always easier to maintain the status quo than to go against the " old way of thinking and doing " things. This is an " opinion " not a fact regarding Steere's mental debility. Yet, even greed and avarice do not fully explain how he can blatantly lie year after year in the face of a growing body of scientific evidence. That he's been given the gold medal, and now this undeserved honor from the NIH only speaks of how uninformed and uncaring the entities are that awarded him these visible honors. In my humble opinion, both Polly Murray and the other woman who brought the number of juvenile arthritis cases given the small population to the health department's attention are the ones who deserve the accolades. Steere was simply doing what he was supposed to be doing, and without Polly, I doubt he would have even found out as much as he did about LD, because he's so close minded and egocentric. No offense to any of the people on this list, but I am also willing to bet that Steere is also on the short side, and may suffer from this aspect who are shorter than average which translates in to them being petty tyrants or unwilling to accept information that they don't originate among other personality traits. I just know that big bucks are involved and too many people are making money from our suffering and pain. It seems to me that the subject of a post I made recently regarding Necessary Shift? is a way to dump Steere and his over diagnosed and over treated mantra. Not that the good doctors treating Lyme are abandoning us, far from it, but that they are seeking ways to circumvent Steere and his clique of non thinking scoyphants who continue to support and repeat this worn out mantra of Steere's. After all, wasn't it reported that SKB dumped the Yale clinic finally after not wanting to be associated with the clinic due to the personnel's harsh treatment of Lyme patients, when reviewing medical records and or treating them as their own patients. Yale like the Mayo has a reputation that once meant something, but corporate sponsorship of colleges has taken that integrity away. In the past year or so, the Mayo was publishing at their web site that " opiates " (they probably used narcotics) should never be used to treat intractable chronic pain. Some of us connected with a chronic pain group sent e-mails stating that this was outdated and incorrect information that due to the Mayo's stature world wide, their misinformation on treatment of pain was preventing hundreds of thousands of people world wide from receiving adequate pain relief for intractable chronic pain because of the weight physician's give to information coming from the Mayo. The Mayo and other entities with this icon status MUST be truthful in what they publish as they can cause great harm by merely having a web site that does publish outdated incorrect information. If the people at these bastions of credibility don't know the " truth " then they should be willing to publish both sides of a controversy in medicine and held accountable if they don't. I've read of so many people who went to the Mayo for help with their pain because of the Mayo's icon status and reputation only to be told to lean to live with the pain. This is not acceptable treatment in this day and age. The same is true for Lyme patients seeking help from the Mayo, as I understand it the Mayo does not treat Lyme patients period. Someone please correct me if this is not correct. Supporting documentation was sent along with the e-mails and then sent snail mail, and the Mayo did indeed change the information published at their web site. Maybe they were going to do it anyway, I don't know, but these entities, larger than life, do indeed have a moral responsibility to publish correct information even if they do not agree with it per se. I believe in the power of the pen, too many times it's been proven to me that it does work. Especially in this day and age when taking pen in hand is not the norm anymore and form letters are accepted. To take the time to write an opinion and support that opinion with facts, I believe is a powerful statement. If we all do it, then it's an even more powerful statement. We absolutely must not let web sites get away with printing Steere's mantra, pointing out that it is NOT based on scientific findings but personal opinion. We should encourage the people writing medical columns at papers to read two books at least, Coping With Lyme Disease-Second Edition, Lang, and The Widening Circle, Polly Murray. I bought these two books and gave them to my pain management physician who was having a great deal of difficulty wrapping his mind around Lyme Disease and the fact that it must be treated with higher dose and longer periods of antibiotics. The pain doctor I had before him at the same clinic understood the Lyme Disease dilemma, but we had a conflict so I opted to see the physician I see now who didn't know much about Lyme except what Steere had repeated ad nauseum. It seems to me that people do not stop to think about the fact that the Baby Boomers and all who came after them have been fed a steady diet of antibiotics in the cattle, swine, and poultry we have utilized for food sources most of our lives. It only makes common sense that should we get an especially difficult bacterial infection that it would take more and longer doses of treatment to kill the bacteria especially if it's been undiagnosed and untreated for many years. I simply do not understand what is so difficult for the over diagnosed and over treated bunch of idiots to understand about this fact. I do believe that the money poured into the pockets of the naysayers by insurance companies has more to do with the more accepted minimal treatment of Lyme Disease than any other single factor. The insurance companies (not all of them but far too many) just want to increase their profits, and until HMO's became fact, it was much easier to be treated for Lyme Disease, providing you had a Lyme literate physician. Now, not only do the doctors have to be concerned about their peers, they also have to be concerned about the insurance companies and pharmacists turning them in for malpractice to state medical boards simply because they are using the only known treatment that works on Lyme Disease, antibiotics. My opinion is that they will find that antibiotics are the cure for Lyme, but it will most probably be a class of antibiotic that has not even been discovered to date. I had so many wonderful changes in symptoms that had not changed throughout most of my adult life when I was finally allowed to receive antibiotic infusions. But, they were not long enough and I can't get approved again and have already re-mortgaged my home, so there are no funds for more antibiotic infusions that showed me that my life could be so much more and gave me hope again! All the symptoms have not yet reverted back to pre infusion status, but they are changing. That's what's so crazy, I responded exceptionally well to the infusions after using orals and combos first to lessen the bacterial load in my body. But it doesn't matter because some unnamed doctor a Yale reviewed my medical records and stated that treatment for the late stage Lyme Disease with neurological involvement, was " not a medical necessity " , and that's the end of the story. Regardless of how my own doctor's opinion, and the second opinion, plus an 8 " thick file and 20 year history plus Western Blot confirmation all show I've suffered so many years and NOTHING else has ever caused betterment except the antibiotic treatments for Lyme Disease. I was seronegative on ELISA which we all know means nothing. Doctors do not want to risk careers, tenure, homes, and they ability to earn a living, and who can blame them! We must continue our efforts in an accepted or unaccepted manner to get the truth out, in order to protect the few physician's who are compassionate and putting all on the line to treat people like us with Lyme Disease because no one else will bother to help us with the suffering and pain, both physical and emotional. We have to help get the truth out in order to help protect our physicians and in order to help ourselves. Maybe not something most of us can do daily, but when we have those better days from time to time, we can use those days to help promote Lyme Disease awareness. Over 50% of the new cases of Lyme Disease reported each year involve children, our most precious natural resource. And, as we all know, the reported cases are just a tip of the actual number of new cases because of the narrow guidelines put out by the CDC and because people just do not know about Lyme Disease, as there is very little awareness across the United States except within the Lyme community. I believe we have two major needs, to get the outdated CDC criteria changed through public outcry, but to do that we have to first make people aware that Lyme Disease is the fastest growing infectious disease that it is surpassing AIDS in the number of new cases each year. That means we must make " Lyme Awareness Now " a fact, not just something I put on my e-mails. We should all use some kind of organization name on our e-mails indicating the importance of Lyme Awareness Now! It's a beginning and we have to start somewhere. Wishing us all health and freedom from pain, both physical and emotional - C.Tab. wrote: > From: " C.Tab. " <tab@...> > > >Anyone ready to take a stand to STOP STEERE? > > > > Hi, > > Is there anything that we at out computers can do in addition to suggesting > questions? Quote Link to comment Share on other sites More sharing options...
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Guest guest Posted October 24, 1999 Report Share Posted October 24, 1999 and all, I was " lucky " in having a doctor who fairly quickly recognized my symptoms as late Lyme and " lucky " to have insurance that's so far agreed to pay for 8 weeks (and probably more) IV. So far, for me, it's been a breeze (aside from having to be my own doctor to figure out the best treatment and being terribly sick) But everyday stories like yours, , that appear in my emailbox, make me more and more enraged. How are Lyme activists organized? Is there one particular organization that is more action oriented? Are the various activists activities centralized? Is there a place where all the Steere shit (bull shit) has been catalogued? Is there an activist list like there is for CFIDS? I agree that a long article or book on the Steere story would be very valuable. I'm not a professional writer but I do have some writing experience and some hope of pitching an article to a major paper or magazine through some personal connections. I can imagine taking this on especially when my work schedule is trimmed back as it's been. The one thing I CAN do when I'm not too brain foggy is research and type away on my laptop, but I would need help gathering the material that many Lymies probably have filed away. Relatively speaking, I'm a newcomer to LD and I would be happy to work with anybody or group that's already organized or willing to start up something fresh. Footwork for me would be difficult simply because I live in California. Let me know what you think. beth Re: [Lyme-aid] STOP STEERE > From: <swsftwtx@...> > > My opinion on Steere is that he does have Lyme > and it affects his brain, causing him to be a > megalomaniac. If Steere didn't or doesn't think of > something, then of course it cannot possibly be true. > Think about it. Even in The Widening Circle, the > author relates how the military physician told Steere > he had good results using antibiotics with the military > personnel who had Lyme. Steere dismisses the whole > thing stating something to the effect that " he has tried > antibiotics, and they didn't work " , of course we know > he probably used for 10-14 days and who knows what > antibiotic he tried! I would love to find out who the > military physician was who used abx and found them > to be working to make the military personnel well, when > Lyme caught at onset. And, I'd love to find out if he > does treat Lyme in private practice now, assuming > he was not career military. He may have been career > and this is moot, but I sure would like to get his take on > Steere during the beginning of the investigation of the > mysterious illness re-named Lyme Disease due to the > community of Old Lyme CT having so many people sick > with the disease. > > All these years, Steere has steadfastly refused to accept > the scientific evidence published and available to read > and only accepts his own " ideas " and worn out mantra, > of over diagnosed and over treated. For a supposedly > intelligent man to ignore scientific evidence and repeat > his own mantra that does not have scientific basis, is > simply stupid and causing great harm to so many people. > I know some large portion of physicians are egocentric > but this takes the cake. > > I understand he has a forceful personality and speaks well > and there have been people like him throughout time who > have persuaded others to folly, even to causing great harm > to others. As we know, many but not all physician's do not > like changes, and it's always easier to maintain the status quo > than to go against the " old way of thinking and doing " things. > > This is an " opinion " not a fact regarding Steere's mental > debility. Yet, even greed and avarice do not fully explain > how he can blatantly lie year after year in the face of a > growing body of scientific evidence. That he's been given > the gold medal, and now this undeserved honor from the > NIH only speaks of how uninformed and uncaring the > entities are that awarded him these visible honors. In > my humble opinion, both Polly Murray and the other woman > who brought the number of juvenile arthritis cases given the > small population to the health department's attention are the > ones who deserve the accolades. Steere was simply doing > what he was supposed to be doing, and without Polly, I > doubt he would have even found out as much as he did about > LD, because he's so close minded and egocentric. > > No offense to any of the people on this list, but I am also > willing to bet that Steere is also on the short side, and may > suffer from this aspect who are shorter than average which > translates in to them being petty tyrants or unwilling to accept > information that they don't originate among other personality > traits. I just know that big bucks are involved and too > many people are making money from our suffering and pain. > It seems to me that the subject of a post I made recently > regarding Necessary Shift? is a way to dump Steere and his > over diagnosed and over treated mantra. Not that the good > doctors treating Lyme are abandoning us, far from it, but that > they are seeking ways to circumvent Steere and his clique of > non thinking scoyphants who continue to support and repeat > this worn out mantra of Steere's. > > After all, wasn't it reported that SKB dumped the Yale clinic > finally after not wanting to be associated with the clinic due to > the personnel's harsh treatment of Lyme patients, when reviewing > medical records and or treating them as their own patients. Yale > like the Mayo has a reputation that once meant something, but > corporate sponsorship of colleges has taken that integrity away. > > In the past year or so, the Mayo was publishing at their web site > that " opiates " (they probably used narcotics) should never be used > to treat intractable chronic pain. Some of us connected with a > chronic pain group sent e-mails stating that this was outdated and > incorrect information that due to the Mayo's stature world wide, > their misinformation on treatment of pain was preventing hundreds > of thousands of people world wide from receiving adequate pain > relief for intractable chronic pain because of the weight physician's > give to information coming from the Mayo. The Mayo and other > entities with this icon status MUST be truthful in what they publish > as they can cause great harm by merely having a web site that does > publish outdated incorrect information. If the people at these > bastions of credibility don't know the " truth " then they should be > willing to publish both sides of a controversy in medicine and held > accountable if they don't. I've read of so many people who went > to the Mayo for help with their pain because of the Mayo's icon > status and reputation only to be told to lean to live with the pain. > This is not acceptable treatment in this day and age. The same is > true for Lyme patients seeking help from the Mayo, as I understand > it the Mayo does not treat Lyme patients period. Someone please > correct me if this is not correct. > > Supporting documentation was sent along with the e-mails and > then sent snail mail, and the Mayo did indeed change the information > published at their web site. Maybe they were going to do it anyway, > I don't know, but these entities, larger than life, do indeed have a > moral responsibility to publish correct information even if they do > not agree with it per se. > > I believe in the power of the pen, too many times it's been proven > to me that it does work. Especially in this day and age when taking > pen in hand is not the norm anymore and form letters are accepted. > To take the time to write an opinion and support that opinion with > facts, I believe is a powerful statement. If we all do it, then it's an > even more powerful statement. We absolutely must not let web > sites get away with printing Steere's mantra, pointing out that it is > NOT based on scientific findings but personal opinion. We should > encourage the people writing medical columns at papers to read two > books at least, Coping With Lyme Disease-Second Edition, > Lang, and The Widening Circle, Polly Murray. I bought these two > books and gave them to my pain management physician who was > having a great deal of difficulty wrapping his mind around Lyme Disease > and the fact that it must be treated with higher dose and longer periods > of antibiotics. The pain doctor I had before him at the same clinic > understood the Lyme Disease dilemma, but we had a conflict so I > opted to see the physician I see now who didn't know much about > Lyme except what Steere had repeated ad nauseum. > > It seems to me that people do not stop to think about the fact that > the Baby Boomers and all who came after them have been fed a > steady diet of antibiotics in the cattle, swine, and poultry we have > utilized for food sources most of our lives. It only makes common > sense that should we get an especially difficult bacterial infection > that it would take more and longer doses of treatment to kill the > bacteria especially if it's been undiagnosed and untreated for many > years. I simply do not understand what is so difficult for the over > diagnosed and over treated bunch of idiots to understand about this > fact. > > I do believe that the money poured into the pockets of the naysayers > by insurance companies has more to do with the more accepted > minimal treatment of Lyme Disease than any other single factor. The > insurance companies (not all of them but far too many) just want to > increase their profits, and until HMO's became fact, it was much > easier to be treated for Lyme Disease, providing you had a Lyme > literate physician. Now, not only do the doctors have to be > concerned about their peers, they also have to be concerned about > the insurance companies and pharmacists turning them in for > malpractice to state medical boards simply because they are using the > only known treatment that works on Lyme Disease, antibiotics. > > My opinion is that they will find that antibiotics are the cure for > Lyme, but it will most probably be a class of antibiotic that has > not even been discovered to date. I had so many wonderful > changes in symptoms that had not changed throughout most of > my adult life when I was finally allowed to receive antibiotic > infusions. > > But, they were not long enough and I can't get approved again > and have already re-mortgaged my home, so there are no funds for > more antibiotic infusions that showed me that my life could be so much > more and gave me hope again! All the symptoms have not yet > reverted back to pre infusion status, but they are changing. That's > what's so crazy, I responded exceptionally well to the infusions after > using orals and combos first to lessen the bacterial load in my body. > But it doesn't matter because some unnamed doctor a Yale reviewed > my medical records and stated that treatment for the late stage Lyme > Disease with neurological involvement, was " not a medical necessity " , > and that's the end of the story. Regardless of how my own doctor's > opinion, and the second opinion, plus an 8 " thick file and 20 year > history plus Western Blot confirmation all show I've suffered so many > years and NOTHING else has ever caused betterment except the > antibiotic treatments for Lyme Disease. I was seronegative on ELISA > which we all know means nothing. > > > Doctors do not want to risk careers, tenure, homes, and they ability > to earn a living, and who can blame them! We must continue our > efforts in an accepted or unaccepted manner to get the truth out, in > order to protect the few physician's who are compassionate and > putting all on the line to treat people like us with Lyme Disease > because no one else will bother to help us with the suffering and > pain, both physical and emotional. We have to help get the truth > out in order to help protect our physicians and in order to help > ourselves. Maybe not something most of us can do daily, but when > we have those better days from time to time, we can use those days > to help promote Lyme Disease awareness. > > Over 50% of the new cases of Lyme Disease reported each year > involve children, our most precious natural resource. And, as > we all know, the reported cases are just a tip of the actual > number of new cases because of the narrow guidelines put out > by the CDC and because people just do not know about Lyme > Disease, as there is very little awareness across the United States > except within the Lyme community. I believe we have two major > needs, to get the outdated CDC criteria changed through public > outcry, but to do that we have to first make people aware that > Lyme Disease is the fastest growing infectious disease that it > is surpassing AIDS in the number of new cases each year. That > means we must make " Lyme Awareness Now " a fact, not just something > I put on my e-mails. We should all use some kind of organization > name on our e-mails indicating the importance of Lyme Awareness Now! > It's a beginning and we have to start somewhere. > > Wishing us all health and freedom from pain, > both physical and emotional - > > > C.Tab. wrote: > > > From: " C.Tab. " <tab@...> > > > > >Anyone ready to take a stand to STOP STEERE? > > > > > > > Hi, > > > > Is there anything that we at out computers can do in addition to suggesting > > questions? > > > Send to -Offtopiconelist messages unrelated to lyme, please. > /archive/lyme-aid > /archives.cgi/Lyme-Documents > To unsubscribe, send email to -unsubscribeonelist > You may substitute " subscribe " , or " digest " or " normal " for > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1999 Report Share Posted October 24, 1999 Christie, You made a lot of good points, maybe you can take what you said here and email or send it to NIH and to CDC. Vicki [Lyme-aid] STOP STEERE >From: " C.Tab. " <tab@...> > >>Anyone ready to take a stand to STOP STEERE? >> > >Hi, > >Is there anything that we at out computers can do in addition to suggesting >questions? Mine would be why is he closed to new research and why doesn't >he listen to patients? MS people used to complain about pain but docs >learned in school that MS doesn't cause pain! So knowledge about that >disease was held up because patients weren't listened to. And this >situation sounds similiar with exception that Steere doesn't even listen to > other doctors! Also, would it be appropriate to publically offer support >MI doc, mentioned in previous press release post who cannot treat lyme? He >was my former doc and was not only competant but a truly good person. > >The reference to suicide caught my eye as I live in MI - home of the >infamous Dr. Kevorkian. People with CFIDS/FM have sought him for aid in >their suicides. I have know of other folks with difficult to diagnose >conditions, who are not believed and helped in some way, also committing >suicide. One of the lists I have is named after a CFIDS listmember who >took her life rather than endure the quaility of life her illness brought. > > If Steere has caused this kind of misery, these facts must be brought out >and his treatment protocal ended - especially in view that people not >matching CDC criteria get treated, and get remission or better. It also >sounds like the CDC isn't listening either - something I have seen before. >CDC purposely misappropriated CFS research monies recently and when I had a >certain parasitic infection, and alternative doc dx'ed it as it supposedly >didn't exist in USA. It is both sad and frightening to know our >institutions that are supposed to help and protect us cannot be trusted. > >Getting off my soapbox now, > >Christie > >~The patient's word is the best diagnostic tool!~ > >>Send to -Offtopiconelist messages unrelated to lyme, please. >/archive/lyme-aid >/archives.cgi/Lyme-Documents >To unsubscribe, send email to -unsubscribeonelist >You may substitute " subscribe " , or " digest " or " normal " for >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1999 Report Share Posted October 24, 1999 beth, With your talent and all the wonderful professional advice you give, I think if you just started writing letters and keep on sending them, to the senate, (especially Kennedy' camp) and CDC, that would be wonderful. Also, can you read a post from ' " at www.lymeaid.org and to the left go to flash, then search " " , and choose 50, you will see something about a Web Site he is putting together and looking for writers. He is hoping it can be used to educate employers, friends, etc. It may help if you could write something there, his post may be entitled, something like " Looking for Writers " . If you are interested, but have trouble finding it, let me know and I can help further. Thanks Vicki Re: [Lyme-aid] STOP STEERE >From: beth Feldman <elsbeth@...> > > and all, > >I was " lucky " in having a doctor who fairly quickly recognized my symptoms >as late Lyme and " lucky " to have insurance that's so far agreed to pay for 8 >weeks (and probably more) IV. So far, for me, it's been a breeze (aside from >having to be my own doctor to figure out the best treatment and being >terribly sick) But everyday stories like yours, , that appear in my >emailbox, make me more and more enraged. > >How are Lyme activists organized? Is there one particular organization that >is more action oriented? Are the various activists activities centralized? >Is there a place where all the Steere shit (bull shit) has been catalogued? >Is there an activist list like there is for CFIDS? > >I agree that a long article or book on the Steere story would be very >valuable. I'm not a professional writer but I do have some writing >experience and some hope of pitching an article to a major paper or magazine >through some personal connections. I can imagine taking this on especially >when my work schedule is trimmed back as it's been. The one thing I CAN do >when I'm not too brain foggy is research and type away on my laptop, but I >would need help gathering the material that many Lymies probably have filed >away. > >Relatively speaking, I'm a newcomer to LD and I would be happy to work with >anybody or group that's already organized or willing to start up something >fresh. Footwork for me would be difficult simply because I live in >California. > >Let me know what you think. > >beth > Re: [Lyme-aid] STOP STEERE > > >> From: <swsftwtx@...> >> >> My opinion on Steere is that he does have Lyme >> and it affects his brain, causing him to be a >> megalomaniac. If Steere didn't or doesn't think of >> something, then of course it cannot possibly be true. >> Think about it. Even in The Widening Circle, the >> author relates how the military physician told Steere >> he had good results using antibiotics with the military >> personnel who had Lyme. Steere dismisses the whole >> thing stating something to the effect that " he has tried >> antibiotics, and they didn't work " , of course we know >> he probably used for 10-14 days and who knows what >> antibiotic he tried! I would love to find out who the >> military physician was who used abx and found them >> to be working to make the military personnel well, when >> Lyme caught at onset. And, I'd love to find out if he >> does treat Lyme in private practice now, assuming >> he was not career military. He may have been career >> and this is moot, but I sure would like to get his take on >> Steere during the beginning of the investigation of the >> mysterious illness re-named Lyme Disease due to the >> community of Old Lyme CT having so many people sick >> with the disease. >> >> All these years, Steere has steadfastly refused to accept >> the scientific evidence published and available to read >> and only accepts his own " ideas " and worn out mantra, >> of over diagnosed and over treated. For a supposedly >> intelligent man to ignore scientific evidence and repeat >> his own mantra that does not have scientific basis, is >> simply stupid and causing great harm to so many people. >> I know some large portion of physicians are egocentric >> but this takes the cake. >> >> I understand he has a forceful personality and speaks well >> and there have been people like him throughout time who >> have persuaded others to folly, even to causing great harm >> to others. As we know, many but not all physician's do not >> like changes, and it's always easier to maintain the status quo >> than to go against the " old way of thinking and doing " things. >> >> This is an " opinion " not a fact regarding Steere's mental >> debility. Yet, even greed and avarice do not fully explain >> how he can blatantly lie year after year in the face of a >> growing body of scientific evidence. That he's been given >> the gold medal, and now this undeserved honor from the >> NIH only speaks of how uninformed and uncaring the >> entities are that awarded him these visible honors. In >> my humble opinion, both Polly Murray and the other woman >> who brought the number of juvenile arthritis cases given the >> small population to the health department's attention are the >> ones who deserve the accolades. Steere was simply doing >> what he was supposed to be doing, and without Polly, I >> doubt he would have even found out as much as he did about >> LD, because he's so close minded and egocentric. >> >> No offense to any of the people on this list, but I am also >> willing to bet that Steere is also on the short side, and may >> suffer from this aspect who are shorter than average which >> translates in to them being petty tyrants or unwilling to accept >> information that they don't originate among other personality >> traits. I just know that big bucks are involved and too >> many people are making money from our suffering and pain. >> It seems to me that the subject of a post I made recently >> regarding Necessary Shift? is a way to dump Steere and his >> over diagnosed and over treated mantra. Not that the good >> doctors treating Lyme are abandoning us, far from it, but that >> they are seeking ways to circumvent Steere and his clique of >> non thinking scoyphants who continue to support and repeat >> this worn out mantra of Steere's. >> >> After all, wasn't it reported that SKB dumped the Yale clinic >> finally after not wanting to be associated with the clinic due to >> the personnel's harsh treatment of Lyme patients, when reviewing >> medical records and or treating them as their own patients. Yale >> like the Mayo has a reputation that once meant something, but >> corporate sponsorship of colleges has taken that integrity away. >> >> In the past year or so, the Mayo was publishing at their web site >> that " opiates " (they probably used narcotics) should never be used >> to treat intractable chronic pain. Some of us connected with a >> chronic pain group sent e-mails stating that this was outdated and >> incorrect information that due to the Mayo's stature world wide, >> their misinformation on treatment of pain was preventing hundreds >> of thousands of people world wide from receiving adequate pain >> relief for intractable chronic pain because of the weight physician's >> give to information coming from the Mayo. The Mayo and other >> entities with this icon status MUST be truthful in what they publish >> as they can cause great harm by merely having a web site that does >> publish outdated incorrect information. If the people at these >> bastions of credibility don't know the " truth " then they should be >> willing to publish both sides of a controversy in medicine and held >> accountable if they don't. I've read of so many people who went >> to the Mayo for help with their pain because of the Mayo's icon >> status and reputation only to be told to lean to live with the pain. >> This is not acceptable treatment in this day and age. The same is >> true for Lyme patients seeking help from the Mayo, as I understand >> it the Mayo does not treat Lyme patients period. Someone please >> correct me if this is not correct. >> >> Supporting documentation was sent along with the e-mails and >> then sent snail mail, and the Mayo did indeed change the information >> published at their web site. Maybe they were going to do it anyway, >> I don't know, but these entities, larger than life, do indeed have a >> moral responsibility to publish correct information even if they do >> not agree with it per se. >> >> I believe in the power of the pen, too many times it's been proven >> to me that it does work. Especially in this day and age when taking >> pen in hand is not the norm anymore and form letters are accepted. >> To take the time to write an opinion and support that opinion with >> facts, I believe is a powerful statement. If we all do it, then it's an >> even more powerful statement. We absolutely must not let web >> sites get away with printing Steere's mantra, pointing out that it is >> NOT based on scientific findings but personal opinion. We should >> encourage the people writing medical columns at papers to read two >> books at least, Coping With Lyme Disease-Second Edition, >> Lang, and The Widening Circle, Polly Murray. I bought these two >> books and gave them to my pain management physician who was >> having a great deal of difficulty wrapping his mind around Lyme Disease >> and the fact that it must be treated with higher dose and longer periods >> of antibiotics. The pain doctor I had before him at the same clinic >> understood the Lyme Disease dilemma, but we had a conflict so I >> opted to see the physician I see now who didn't know much about >> Lyme except what Steere had repeated ad nauseum. >> >> It seems to me that people do not stop to think about the fact that >> the Baby Boomers and all who came after them have been fed a >> steady diet of antibiotics in the cattle, swine, and poultry we have >> utilized for food sources most of our lives. It only makes common >> sense that should we get an especially difficult bacterial infection >> that it would take more and longer doses of treatment to kill the >> bacteria especially if it's been undiagnosed and untreated for many >> years. I simply do not understand what is so difficult for the over >> diagnosed and over treated bunch of idiots to understand about this >> fact. >> >> I do believe that the money poured into the pockets of the naysayers >> by insurance companies has more to do with the more accepted >> minimal treatment of Lyme Disease than any other single factor. The >> insurance companies (not all of them but far too many) just want to >> increase their profits, and until HMO's became fact, it was much >> easier to be treated for Lyme Disease, providing you had a Lyme >> literate physician. Now, not only do the doctors have to be >> concerned about their peers, they also have to be concerned about >> the insurance companies and pharmacists turning them in for >> malpractice to state medical boards simply because they are using the >> only known treatment that works on Lyme Disease, antibiotics. >> >> My opinion is that they will find that antibiotics are the cure for >> Lyme, but it will most probably be a class of antibiotic that has >> not even been discovered to date. I had so many wonderful >> changes in symptoms that had not changed throughout most of >> my adult life when I was finally allowed to receive antibiotic >> infusions. >> >> But, they were not long enough and I can't get approved again >> and have already re-mortgaged my home, so there are no funds for >> more antibiotic infusions that showed me that my life could be so much >> more and gave me hope again! All the symptoms have not yet >> reverted back to pre infusion status, but they are changing. That's >> what's so crazy, I responded exceptionally well to the infusions after >> using orals and combos first to lessen the bacterial load in my body. >> But it doesn't matter because some unnamed doctor a Yale reviewed >> my medical records and stated that treatment for the late stage Lyme >> Disease with neurological involvement, was " not a medical necessity " , >> and that's the end of the story. Regardless of how my own doctor's >> opinion, and the second opinion, plus an 8 " thick file and 20 year >> history plus Western Blot confirmation all show I've suffered so many >> years and NOTHING else has ever caused betterment except the >> antibiotic treatments for Lyme Disease. I was seronegative on ELISA >> which we all know means nothing. >> >> >> Doctors do not want to risk careers, tenure, homes, and they ability >> to earn a living, and who can blame them! We must continue our >> efforts in an accepted or unaccepted manner to get the truth out, in >> order to protect the few physician's who are compassionate and >> putting all on the line to treat people like us with Lyme Disease >> because no one else will bother to help us with the suffering and >> pain, both physical and emotional. We have to help get the truth >> out in order to help protect our physicians and in order to help >> ourselves. Maybe not something most of us can do daily, but when >> we have those better days from time to time, we can use those days >> to help promote Lyme Disease awareness. >> >> Over 50% of the new cases of Lyme Disease reported each year >> involve children, our most precious natural resource. And, as >> we all know, the reported cases are just a tip of the actual >> number of new cases because of the narrow guidelines put out >> by the CDC and because people just do not know about Lyme >> Disease, as there is very little awareness across the United States >> except within the Lyme community. I believe we have two major >> needs, to get the outdated CDC criteria changed through public >> outcry, but to do that we have to first make people aware that >> Lyme Disease is the fastest growing infectious disease that it >> is surpassing AIDS in the number of new cases each year. That >> means we must make " Lyme Awareness Now " a fact, not just something >> I put on my e-mails. We should all use some kind of organization >> name on our e-mails indicating the importance of Lyme Awareness Now! >> It's a beginning and we have to start somewhere. >> >> Wishing us all health and freedom from pain, >> both physical and emotional - >> >> >> C.Tab. wrote: >> >> > From: " C.Tab. " <tab@...> >> > >> > >Anyone ready to take a stand to STOP STEERE? >> > > >> > >> > Hi, >> > >> > Is there anything that we at out computers can do in addition to >suggesting >> > questions? >> >> > Send to -Offtopiconelist messages unrelated to lyme, please. >> /archive/lyme-aid >> /archives.cgi/Lyme-Documents >> To unsubscribe, send email to -unsubscribeonelist >> You may substitute " subscribe " , or " digest " or " normal " for >> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave >blank both the message and subject header. >> > >>Send to -Offtopiconelist messages unrelated to lyme, please. >/archive/lyme-aid >/archives.cgi/Lyme-Documents >To unsubscribe, send email to -unsubscribeonelist >You may substitute " subscribe " , or " digest " or " normal " for >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1999 Report Share Posted October 24, 1999 Thanks Vicki, I just responded to his post before I got yours! The network is tighter than I thought! beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1999 Report Share Posted October 24, 1999 , I think you should try to get this letter you just wrote, published. It covers a lot of information very concisely. I enjoyed reading it, and wished I could write as well as you do. Obviously, your Brain Fog isn't back, or wasn't when you wrote all this. What a wonderful post. Did I tell you there is a man at www.lymeaid.org on the flash (support group) trying to collect articles for a new website he is building. I would like to send this post to him, or you can, let me know. I really think the things you said covered so much, that it would be a great article for the site. Please let me know if I can send it to him, or if you would like to know more about how to contact him. Vicki Vicki Re: [Lyme-aid] STOP STEERE >From: <swsftwtx@...> > >My opinion on Steere is that he does have Lyme >and it affects his brain, causing him to be a >megalomaniac. If Steere didn't or doesn't think of >something, then of course it cannot possibly be true. >Think about it. Even in The Widening Circle, the >author relates how the military physician told Steere >he had good results using antibiotics with the military >personnel who had Lyme. Steere dismisses the whole >thing stating something to the effect that " he has tried >antibiotics, and they didn't work " , of course we know >he probably used for 10-14 days and who knows what >antibiotic he tried! I would love to find out who the >military physician was who used abx and found them >to be working to make the military personnel well, when >Lyme caught at onset. And, I'd love to find out if he >does treat Lyme in private practice now, assuming >he was not career military. He may have been career >and this is moot, but I sure would like to get his take on >Steere during the beginning of the investigation of the >mysterious illness re-named Lyme Disease due to the >community of Old Lyme CT having so many people sick >with the disease. > >All these years, Steere has steadfastly refused to accept >the scientific evidence published and available to read >and only accepts his own " ideas " and worn out mantra, >of over diagnosed and over treated. For a supposedly >intelligent man to ignore scientific evidence and repeat >his own mantra that does not have scientific basis, is >simply stupid and causing great harm to so many people. >I know some large portion of physicians are egocentric >but this takes the cake. > >I understand he has a forceful personality and speaks well >and there have been people like him throughout time who >have persuaded others to folly, even to causing great harm >to others. As we know, many but not all physician's do not >like changes, and it's always easier to maintain the status quo >than to go against the " old way of thinking and doing " things. > >This is an " opinion " not a fact regarding Steere's mental >debility. Yet, even greed and avarice do not fully explain >how he can blatantly lie year after year in the face of a >growing body of scientific evidence. That he's been given >the gold medal, and now this undeserved honor from the >NIH only speaks of how uninformed and uncaring the >entities are that awarded him these visible honors. In >my humble opinion, both Polly Murray and the other woman >who brought the number of juvenile arthritis cases given the >small population to the health department's attention are the >ones who deserve the accolades. Steere was simply doing >what he was supposed to be doing, and without Polly, I >doubt he would have even found out as much as he did about >LD, because he's so close minded and egocentric. > >No offense to any of the people on this list, but I am also >willing to bet that Steere is also on the short side, and may >suffer from this aspect who are shorter than average which >translates in to them being petty tyrants or unwilling to accept >information that they don't originate among other personality >traits. I just know that big bucks are involved and too >many people are making money from our suffering and pain. >It seems to me that the subject of a post I made recently >regarding Necessary Shift? is a way to dump Steere and his >over diagnosed and over treated mantra. Not that the good >doctors treating Lyme are abandoning us, far from it, but that >they are seeking ways to circumvent Steere and his clique of >non thinking scoyphants who continue to support and repeat >this worn out mantra of Steere's. > >After all, wasn't it reported that SKB dumped the Yale clinic >finally after not wanting to be associated with the clinic due to >the personnel's harsh treatment of Lyme patients, when reviewing >medical records and or treating them as their own patients. Yale >like the Mayo has a reputation that once meant something, but >corporate sponsorship of colleges has taken that integrity away. > >In the past year or so, the Mayo was publishing at their web site >that " opiates " (they probably used narcotics) should never be used >to treat intractable chronic pain. Some of us connected with a >chronic pain group sent e-mails stating that this was outdated and >incorrect information that due to the Mayo's stature world wide, >their misinformation on treatment of pain was preventing hundreds >of thousands of people world wide from receiving adequate pain >relief for intractable chronic pain because of the weight physician's >give to information coming from the Mayo. The Mayo and other >entities with this icon status MUST be truthful in what they publish >as they can cause great harm by merely having a web site that does >publish outdated incorrect information. If the people at these >bastions of credibility don't know the " truth " then they should be >willing to publish both sides of a controversy in medicine and held >accountable if they don't. I've read of so many people who went >to the Mayo for help with their pain because of the Mayo's icon >status and reputation only to be told to lean to live with the pain. >This is not acceptable treatment in this day and age. The same is >true for Lyme patients seeking help from the Mayo, as I understand >it the Mayo does not treat Lyme patients period. Someone please >correct me if this is not correct. > >Supporting documentation was sent along with the e-mails and >then sent snail mail, and the Mayo did indeed change the information >published at their web site. Maybe they were going to do it anyway, >I don't know, but these entities, larger than life, do indeed have a >moral responsibility to publish correct information even if they do >not agree with it per se. > >I believe in the power of the pen, too many times it's been proven >to me that it does work. Especially in this day and age when taking >pen in hand is not the norm anymore and form letters are accepted. >To take the time to write an opinion and support that opinion with >facts, I believe is a powerful statement. If we all do it, then it's an >even more powerful statement. We absolutely must not let web >sites get away with printing Steere's mantra, pointing out that it is >NOT based on scientific findings but personal opinion. We should >encourage the people writing medical columns at papers to read two >books at least, Coping With Lyme Disease-Second Edition, >Lang, and The Widening Circle, Polly Murray. I bought these two >books and gave them to my pain management physician who was >having a great deal of difficulty wrapping his mind around Lyme Disease >and the fact that it must be treated with higher dose and longer periods >of antibiotics. The pain doctor I had before him at the same clinic >understood the Lyme Disease dilemma, but we had a conflict so I >opted to see the physician I see now who didn't know much about >Lyme except what Steere had repeated ad nauseum. > >It seems to me that people do not stop to think about the fact that >the Baby Boomers and all who came after them have been fed a >steady diet of antibiotics in the cattle, swine, and poultry we have >utilized for food sources most of our lives. It only makes common >sense that should we get an especially difficult bacterial infection >that it would take more and longer doses of treatment to kill the >bacteria especially if it's been undiagnosed and untreated for many >years. I simply do not understand what is so difficult for the over >diagnosed and over treated bunch of idiots to understand about this >fact. > >I do believe that the money poured into the pockets of the naysayers >by insurance companies has more to do with the more accepted >minimal treatment of Lyme Disease than any other single factor. The >insurance companies (not all of them but far too many) just want to >increase their profits, and until HMO's became fact, it was much >easier to be treated for Lyme Disease, providing you had a Lyme >literate physician. Now, not only do the doctors have to be >concerned about their peers, they also have to be concerned about >the insurance companies and pharmacists turning them in for >malpractice to state medical boards simply because they are using the >only known treatment that works on Lyme Disease, antibiotics. > >My opinion is that they will find that antibiotics are the cure for >Lyme, but it will most probably be a class of antibiotic that has >not even been discovered to date. I had so many wonderful >changes in symptoms that had not changed throughout most of >my adult life when I was finally allowed to receive antibiotic >infusions. > >But, they were not long enough and I can't get approved again >and have already re-mortgaged my home, so there are no funds for >more antibiotic infusions that showed me that my life could be so much >more and gave me hope again! All the symptoms have not yet >reverted back to pre infusion status, but they are changing. That's >what's so crazy, I responded exceptionally well to the infusions after >using orals and combos first to lessen the bacterial load in my body. >But it doesn't matter because some unnamed doctor a Yale reviewed >my medical records and stated that treatment for the late stage Lyme >Disease with neurological involvement, was " not a medical necessity " , >and that's the end of the story. Regardless of how my own doctor's >opinion, and the second opinion, plus an 8 " thick file and 20 year >history plus Western Blot confirmation all show I've suffered so many >years and NOTHING else has ever caused betterment except the >antibiotic treatments for Lyme Disease. I was seronegative on ELISA >which we all know means nothing. > > >Doctors do not want to risk careers, tenure, homes, and they ability >to earn a living, and who can blame them! We must continue our >efforts in an accepted or unaccepted manner to get the truth out, in >order to protect the few physician's who are compassionate and >putting all on the line to treat people like us with Lyme Disease >because no one else will bother to help us with the suffering and >pain, both physical and emotional. We have to help get the truth >out in order to help protect our physicians and in order to help >ourselves. Maybe not something most of us can do daily, but when >we have those better days from time to time, we can use those days >to help promote Lyme Disease awareness. > >Over 50% of the new cases of Lyme Disease reported each year >involve children, our most precious natural resource. And, as >we all know, the reported cases are just a tip of the actual >number of new cases because of the narrow guidelines put out >by the CDC and because people just do not know about Lyme >Disease, as there is very little awareness across the United States >except within the Lyme community. I believe we have two major >needs, to get the outdated CDC criteria changed through public >outcry, but to do that we have to first make people aware that >Lyme Disease is the fastest growing infectious disease that it >is surpassing AIDS in the number of new cases each year. That >means we must make " Lyme Awareness Now " a fact, not just something >I put on my e-mails. We should all use some kind of organization >name on our e-mails indicating the importance of Lyme Awareness Now! >It's a beginning and we have to start somewhere. > >Wishing us all health and freedom from pain, >both physical and emotional - > > >C.Tab. wrote: > >> From: " C.Tab. " <tab@...> >> >> >Anyone ready to take a stand to STOP STEERE? >> > >> >> Hi, >> >> Is there anything that we at out computers can do in addition to suggesting >> questions? > >>Send to -Offtopiconelist messages unrelated to lyme, please. >/archive/lyme-aid >/archives.cgi/Lyme-Documents >To unsubscribe, send email to -unsubscribeonelist >You may substitute " subscribe " , or " digest " or " normal " for >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1999 Report Share Posted October 24, 1999 beth, Thanks! I think that is wonderful. Vicki Re: [Lyme-aid] STOP STEERE >From: beth Feldman <elsbeth@...> > >Thanks Vicki, > >I just responded to his post before I got yours! The network is tighter than >I thought! > >beth > >>Send to -Offtopiconelist messages unrelated to lyme, please. >/archive/lyme-aid >/archives.cgi/Lyme-Documents >To unsubscribe, send email to -unsubscribeonelist >You may substitute " subscribe " , or " digest " or " normal " for >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1999 Report Share Posted October 24, 1999 Dear & All, How wonderful for you to think of doing this and having contacts so it could possibly get published is a plus! This is a Lyme URL someone very nice sent me that has a plethora of Lyme information all in one spot! All you have to do is go to this site and click on the links and away you go. I can think of numerous articles that will assist you in your proposed endeavor and if you like I will be glad to send them to you as I find them possibly on a daily basis or whatever you would like. I cannot sit for long and use my computer and I overdid it this morning with my angst while writing my post. Let us know what you would like and I would imagine between the members of this group we can provide you with enough information for a book! Wishing us all health and freedom from pain, both physical and emotional - beth Feldman wrote: > From: beth Feldman <elsbeth@...> > > and all, > > I was " lucky " in having a doctor who fairly quickly recognized my symptoms > as late Lyme and " lucky " to have insurance that's so far agreed to pay for 8 > weeks (and probably more) IV. So far, for me, it's been a breeze (aside from > having to be my own doctor to figure out the best treatment and being > terribly sick) But everyday stories like yours, , that appear in my > emailbox, make me more and more enraged. > > How are Lyme activists organized? Is there one particular organization that > is more action oriented? Are the various activists activities centralized? > Is there a place where all the Steere shit (bull shit) has been catalogued? > Is there an activist list like there is for CFIDS? > > I agree that a long article or book on the Steere story would be very > valuable. I'm not a professional writer but I do have some writing > experience and some hope of pitching an article to a major paper or magazine > through some personal connections. I can imagine taking this on especially > when my work schedule is trimmed back as it's been. The one thing I CAN do > when I'm not too brain foggy is research and type away on my laptop, but I > would need help gathering the material that many Lymies probably have filed > away. > > Relatively speaking, I'm a newcomer to LD and I would be happy to work with > anybody or group that's already organized or willing to start up something > fresh. Footwork for me would be difficult simply because I live in > California. > > Let me know what you think. > > beth > Re: [Lyme-aid] STOP STEERE > > > From: <swsftwtx@...> > > > > My opinion on Steere is that he does have Lyme > > and it affects his brain, causing him to be a > > megalomaniac. If Steere didn't or doesn't think of > > something, then of course it cannot possibly be true. > > Think about it. Even in The Widening Circle, the > > author relates how the military physician told Steere > > he had good results using antibiotics with the military > > personnel who had Lyme. Steere dismisses the whole > > thing stating something to the effect that " he has tried > > antibiotics, and they didn't work " , of course we know > > he probably used for 10-14 days and who knows what > > antibiotic he tried! I would love to find out who the > > military physician was who used abx and found them > > to be working to make the military personnel well, when > > Lyme caught at onset. And, I'd love to find out if he > > does treat Lyme in private practice now, assuming > > he was not career military. He may have been career > > and this is moot, but I sure would like to get his take on > > Steere during the beginning of the investigation of the > > mysterious illness re-named Lyme Disease due to the > > community of Old Lyme CT having so many people sick > > with the disease. > > > > All these years, Steere has steadfastly refused to accept > > the scientific evidence published and available to read > > and only accepts his own " ideas " and worn out mantra, > > of over diagnosed and over treated. For a supposedly > > intelligent man to ignore scientific evidence and repeat > > his own mantra that does not have scientific basis, is > > simply stupid and causing great harm to so many people. > > I know some large portion of physicians are egocentric > > but this takes the cake. > > > > I understand he has a forceful personality and speaks well > > and there have been people like him throughout time who > > have persuaded others to folly, even to causing great harm > > to others. As we know, many but not all physician's do not > > like changes, and it's always easier to maintain the status quo > > than to go against the " old way of thinking and doing " things. > > > > This is an " opinion " not a fact regarding Steere's mental > > debility. Yet, even greed and avarice do not fully explain > > how he can blatantly lie year after year in the face of a > > growing body of scientific evidence. That he's been given > > the gold medal, and now this undeserved honor from the > > NIH only speaks of how uninformed and uncaring the > > entities are that awarded him these visible honors. In > > my humble opinion, both Polly Murray and the other woman > > who brought the number of juvenile arthritis cases given the > > small population to the health department's attention are the > > ones who deserve the accolades. Steere was simply doing > > what he was supposed to be doing, and without Polly, I > > doubt he would have even found out as much as he did about > > LD, because he's so close minded and egocentric. > > > > No offense to any of the people on this list, but I am also > > willing to bet that Steere is also on the short side, and may > > suffer from this aspect who are shorter than average which > > translates in to them being petty tyrants or unwilling to accept > > information that they don't originate among other personality > > traits. I just know that big bucks are involved and too > > many people are making money from our suffering and pain. > > It seems to me that the subject of a post I made recently > > regarding Necessary Shift? is a way to dump Steere and his > > over diagnosed and over treated mantra. Not that the good > > doctors treating Lyme are abandoning us, far from it, but that > > they are seeking ways to circumvent Steere and his clique of > > non thinking scoyphants who continue to support and repeat > > this worn out mantra of Steere's. > > > > After all, wasn't it reported that SKB dumped the Yale clinic > > finally after not wanting to be associated with the clinic due to > > the personnel's harsh treatment of Lyme patients, when reviewing > > medical records and or treating them as their own patients. Yale > > like the Mayo has a reputation that once meant something, but > > corporate sponsorship of colleges has taken that integrity away. > > > > In the past year or so, the Mayo was publishing at their web site > > that " opiates " (they probably used narcotics) should never be used > > to treat intractable chronic pain. Some of us connected with a > > chronic pain group sent e-mails stating that this was outdated and > > incorrect information that due to the Mayo's stature world wide, > > their misinformation on treatment of pain was preventing hundreds > > of thousands of people world wide from receiving adequate pain > > relief for intractable chronic pain because of the weight physician's > > give to information coming from the Mayo. The Mayo and other > > entities with this icon status MUST be truthful in what they publish > > as they can cause great harm by merely having a web site that does > > publish outdated incorrect information. If the people at these > > bastions of credibility don't know the " truth " then they should be > > willing to publish both sides of a controversy in medicine and held > > accountable if they don't. I've read of so many people who went > > to the Mayo for help with their pain because of the Mayo's icon > > status and reputation only to be told to lean to live with the pain. > > This is not acceptable treatment in this day and age. The same is > > true for Lyme patients seeking help from the Mayo, as I understand > > it the Mayo does not treat Lyme patients period. Someone please > > correct me if this is not correct. > > > > Supporting documentation was sent along with the e-mails and > > then sent snail mail, and the Mayo did indeed change the information > > published at their web site. Maybe they were going to do it anyway, > > I don't know, but these entities, larger than life, do indeed have a > > moral responsibility to publish correct information even if they do > > not agree with it per se. > > > > I believe in the power of the pen, too many times it's been proven > > to me that it does work. Especially in this day and age when taking > > pen in hand is not the norm anymore and form letters are accepted. > > To take the time to write an opinion and support that opinion with > > facts, I believe is a powerful statement. If we all do it, then it's an > > even more powerful statement. We absolutely must not let web > > sites get away with printing Steere's mantra, pointing out that it is > > NOT based on scientific findings but personal opinion. We should > > encourage the people writing medical columns at papers to read two > > books at least, Coping With Lyme Disease-Second Edition, > > Lang, and The Widening Circle, Polly Murray. I bought these two > > books and gave them to my pain management physician who was > > having a great deal of difficulty wrapping his mind around Lyme Disease > > and the fact that it must be treated with higher dose and longer periods > > of antibiotics. The pain doctor I had before him at the same clinic > > understood the Lyme Disease dilemma, but we had a conflict so I > > opted to see the physician I see now who didn't know much about > > Lyme except what Steere had repeated ad nauseum. > > > > It seems to me that people do not stop to think about the fact that > > the Baby Boomers and all who came after them have been fed a > > steady diet of antibiotics in the cattle, swine, and poultry we have > > utilized for food sources most of our lives. It only makes common > > sense that should we get an especially difficult bacterial infection > > that it would take more and longer doses of treatment to kill the > > bacteria especially if it's been undiagnosed and untreated for many > > years. I simply do not understand what is so difficult for the over > > diagnosed and over treated bunch of idiots to understand about this > > fact. > > > > I do believe that the money poured into the pockets of the naysayers > > by insurance companies has more to do with the more accepted > > minimal treatment of Lyme Disease than any other single factor. The > > insurance companies (not all of them but far too many) just want to > > increase their profits, and until HMO's became fact, it was much > > easier to be treated for Lyme Disease, providing you had a Lyme > > literate physician. Now, not only do the doctors have to be > > concerned about their peers, they also have to be concerned about > > the insurance companies and pharmacists turning them in for > > malpractice to state medical boards simply because they are using the > > only known treatment that works on Lyme Disease, antibiotics. > > > > My opinion is that they will find that antibiotics are the cure for > > Lyme, but it will most probably be a class of antibiotic that has > > not even been discovered to date. I had so many wonderful > > changes in symptoms that had not changed throughout most of > > my adult life when I was finally allowed to receive antibiotic > > infusions. > > > > But, they were not long enough and I can't get approved again > > and have already re-mortgaged my home, so there are no funds for > > more antibiotic infusions that showed me that my life could be so much > > more and gave me hope again! All the symptoms have not yet > > reverted back to pre infusion status, but they are changing. That's > > what's so crazy, I responded exceptionally well to the infusions after > > using orals and combos first to lessen the bacterial load in my body. > > But it doesn't matter because some unnamed doctor a Yale reviewed > > my medical records and stated that treatment for the late stage Lyme > > Disease with neurological involvement, was " not a medical necessity " , > > and that's the end of the story. Regardless of how my own doctor's > > opinion, and the second opinion, plus an 8 " thick file and 20 year > > history plus Western Blot confirmation all show I've suffered so many > > years and NOTHING else has ever caused betterment except the > > antibiotic treatments for Lyme Disease. I was seronegative on ELISA > > which we all know means nothing. > > > > > > Doctors do not want to risk careers, tenure, homes, and they ability > > to earn a living, and who can blame them! We must continue our > > efforts in an accepted or unaccepted manner to get the truth out, in > > order to protect the few physician's who are compassionate and > > putting all on the line to treat people like us with Lyme Disease > > because no one else will bother to help us with the suffering and > > pain, both physical and emotional. We have to help get the truth > > out in order to help protect our physicians and in order to help > > ourselves. Maybe not something most of us can do daily, but when > > we have those better days from time to time, we can use those days > > to help promote Lyme Disease awareness. > > > > Over 50% of the new cases of Lyme Disease reported each year > > involve children, our most precious natural resource. And, as > > we all know, the reported cases are just a tip of the actual > > number of new cases because of the narrow guidelines put out > > by the CDC and because people just do not know about Lyme > > Disease, as there is very little awareness across the United States > > except within the Lyme community. I believe we have two major > > needs, to get the outdated CDC criteria changed through public > > outcry, but to do that we have to first make people aware that > > Lyme Disease is the fastest growing infectious disease that it > > is surpassing AIDS in the number of new cases each year. That > > means we must make " Lyme Awareness Now " a fact, not just something > > I put on my e-mails. We should all use some kind of organization > > name on our e-mails indicating the importance of Lyme Awareness Now! > > It's a beginning and we have to start somewhere. > > > > Wishing us all health and freedom from pain, > > both physical and emotional - > > > > > > C.Tab. wrote: > > > > > From: " C.Tab. " <tab@...> > > > > > > >Anyone ready to take a stand to STOP STEERE? > > > > > > > > > > Hi, > > > > > > Is there anything that we at out computers can do in addition to > suggesting > > > questions? > > > > > Send to -Offtopiconelist messages unrelated to lyme, please. > > /archive/lyme-aid > > /archives.cgi/Lyme-Documents > > To unsubscribe, send email to -unsubscribeonelist > > You may substitute " subscribe " , or " digest " or " normal " for > > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave > blank both the message and subject header. > > > > > Send to -Offtopiconelist messages unrelated to lyme, please. > /archive/lyme-aid > /archives.cgi/Lyme-Documents > To unsubscribe, send email to -unsubscribeonelist > You may substitute " subscribe " , or " digest " or " normal " for > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1999 Report Share Posted October 24, 1999 It is okay with me if you forward the article, as it is my " opinion " regarding Steere's mental capacity but I am wondering if I can be sued or if the person with the web site can be sued for publishing this article which of course is " speculation " regarding Steere's mental state. I just would like for my e-mail address to be left off any article, it is okay to use my name, after all, there are zillions of s and it's okay to use my state Texas. I would prefer not to use my city, but if it's necessary because I don't want my e-mail addy printed that's okay, it's Fort Worth. As long as it's printed in it's entirety without any changes I have no problem. - Vicki & Ferraro (home) wrote: > From: " Vicki & Ferraro (home) " <ferraroa@...> > > , > > I think you should try to get this letter you just wrote, published. It > covers a lot of information very concisely. I enjoyed reading it, and wished > I could write as well as you do. Obviously, your Brain Fog isn't back, or > wasn't when you wrote all this. What a wonderful post. > > Did I tell you there is a man at www.lymeaid.org on the flash (support > group) trying to collect articles for a new website he is building. I would > like to send this post to him, or you can, let me know. I really think the > things you said covered so much, that it would be a great article for the > site. > Please let me know if I can send it to him, or if you would like to know > more about how to contact him. > Vicki > Vicki > Re: [Lyme-aid] STOP STEERE > > >From: <swsftwtx@...> > > > >My opinion on Steere is that he does have Lyme > >and it affects his brain, causing him to be a > >megalomaniac. If Steere didn't or doesn't think of > >something, then of course it cannot possibly be true. > >Think about it. Even in The Widening Circle, the > >author relates how the military physician told Steere > >he had good results using antibiotics with the military > >personnel who had Lyme. Steere dismisses the whole > >thing stating something to the effect that " he has tried > >antibiotics, and they didn't work " , of course we know > >he probably used for 10-14 days and who knows what > >antibiotic he tried! I would love to find out who the > >military physician was who used abx and found them > >to be working to make the military personnel well, when > >Lyme caught at onset. And, I'd love to find out if he > >does treat Lyme in private practice now, assuming > >he was not career military. He may have been career > >and this is moot, but I sure would like to get his take on > >Steere during the beginning of the investigation of the > >mysterious illness re-named Lyme Disease due to the > >community of Old Lyme CT having so many people sick > >with the disease. > > > >All these years, Steere has steadfastly refused to accept > >the scientific evidence published and available to read > >and only accepts his own " ideas " and worn out mantra, > >of over diagnosed and over treated. For a supposedly > >intelligent man to ignore scientific evidence and repeat > >his own mantra that does not have scientific basis, is > >simply stupid and causing great harm to so many people. > >I know some large portion of physicians are egocentric > >but this takes the cake. > > > >I understand he has a forceful personality and speaks well > >and there have been people like him throughout time who > >have persuaded others to folly, even to causing great harm > >to others. As we know, many but not all physician's do not > >like changes, and it's always easier to maintain the status quo > >than to go against the " old way of thinking and doing " things. > > > >This is an " opinion " not a fact regarding Steere's mental > >debility. Yet, even greed and avarice do not fully explain > >how he can blatantly lie year after year in the face of a > >growing body of scientific evidence. That he's been given > >the gold medal, and now this undeserved honor from the > >NIH only speaks of how uninformed and uncaring the > >entities are that awarded him these visible honors. In > >my humble opinion, both Polly Murray and the other woman > >who brought the number of juvenile arthritis cases given the > >small population to the health department's attention are the > >ones who deserve the accolades. Steere was simply doing > >what he was supposed to be doing, and without Polly, I > >doubt he would have even found out as much as he did about > >LD, because he's so close minded and egocentric. > > > >No offense to any of the people on this list, but I am also > >willing to bet that Steere is also on the short side, and may > >suffer from this aspect who are shorter than average which > >translates in to them being petty tyrants or unwilling to accept > >information that they don't originate among other personality > >traits. I just know that big bucks are involved and too > >many people are making money from our suffering and pain. > >It seems to me that the subject of a post I made recently > >regarding Necessary Shift? is a way to dump Steere and his > >over diagnosed and over treated mantra. Not that the good > >doctors treating Lyme are abandoning us, far from it, but that > >they are seeking ways to circumvent Steere and his clique of > >non thinking scoyphants who continue to support and repeat > >this worn out mantra of Steere's. > > > >After all, wasn't it reported that SKB dumped the Yale clinic > >finally after not wanting to be associated with the clinic due to > >the personnel's harsh treatment of Lyme patients, when reviewing > >medical records and or treating them as their own patients. Yale > >like the Mayo has a reputation that once meant something, but > >corporate sponsorship of colleges has taken that integrity away. > > > >In the past year or so, the Mayo was publishing at their web site > >that " opiates " (they probably used narcotics) should never be used > >to treat intractable chronic pain. Some of us connected with a > >chronic pain group sent e-mails stating that this was outdated and > >incorrect information that due to the Mayo's stature world wide, > >their misinformation on treatment of pain was preventing hundreds > >of thousands of people world wide from receiving adequate pain > >relief for intractable chronic pain because of the weight physician's > >give to information coming from the Mayo. The Mayo and other > >entities with this icon status MUST be truthful in what they publish > >as they can cause great harm by merely having a web site that does > >publish outdated incorrect information. If the people at these > >bastions of credibility don't know the " truth " then they should be > >willing to publish both sides of a controversy in medicine and held > >accountable if they don't. I've read of so many people who went > >to the Mayo for help with their pain because of the Mayo's icon > >status and reputation only to be told to lean to live with the pain. > >This is not acceptable treatment in this day and age. The same is > >true for Lyme patients seeking help from the Mayo, as I understand > >it the Mayo does not treat Lyme patients period. Someone please > >correct me if this is not correct. > > > >Supporting documentation was sent along with the e-mails and > >then sent snail mail, and the Mayo did indeed change the information > >published at their web site. Maybe they were going to do it anyway, > >I don't know, but these entities, larger than life, do indeed have a > >moral responsibility to publish correct information even if they do > >not agree with it per se. > > > >I believe in the power of the pen, too many times it's been proven > >to me that it does work. Especially in this day and age when taking > >pen in hand is not the norm anymore and form letters are accepted. > >To take the time to write an opinion and support that opinion with > >facts, I believe is a powerful statement. If we all do it, then it's an > >even more powerful statement. We absolutely must not let web > >sites get away with printing Steere's mantra, pointing out that it is > >NOT based on scientific findings but personal opinion. We should > >encourage the people writing medical columns at papers to read two > >books at least, Coping With Lyme Disease-Second Edition, > >Lang, and The Widening Circle, Polly Murray. I bought these two > >books and gave them to my pain management physician who was > >having a great deal of difficulty wrapping his mind around Lyme Disease > >and the fact that it must be treated with higher dose and longer periods > >of antibiotics. The pain doctor I had before him at the same clinic > >understood the Lyme Disease dilemma, but we had a conflict so I > >opted to see the physician I see now who didn't know much about > >Lyme except what Steere had repeated ad nauseum. > > > >It seems to me that people do not stop to think about the fact that > >the Baby Boomers and all who came after them have been fed a > >steady diet of antibiotics in the cattle, swine, and poultry we have > >utilized for food sources most of our lives. It only makes common > >sense that should we get an especially difficult bacterial infection > >that it would take more and longer doses of treatment to kill the > >bacteria especially if it's been undiagnosed and untreated for many > >years. I simply do not understand what is so difficult for the over > >diagnosed and over treated bunch of idiots to understand about this > >fact. > > > >I do believe that the money poured into the pockets of the naysayers > >by insurance companies has more to do with the more accepted > >minimal treatment of Lyme Disease than any other single factor. The > >insurance companies (not all of them but far too many) just want to > >increase their profits, and until HMO's became fact, it was much > >easier to be treated for Lyme Disease, providing you had a Lyme > >literate physician. Now, not only do the doctors have to be > >concerned about their peers, they also have to be concerned about > >the insurance companies and pharmacists turning them in for > >malpractice to state medical boards simply because they are using the > >only known treatment that works on Lyme Disease, antibiotics. > > > >My opinion is that they will find that antibiotics are the cure for > >Lyme, but it will most probably be a class of antibiotic that has > >not even been discovered to date. I had so many wonderful > >changes in symptoms that had not changed throughout most of > >my adult life when I was finally allowed to receive antibiotic > >infusions. > > > >But, they were not long enough and I can't get approved again > >and have already re-mortgaged my home, so there are no funds for > >more antibiotic infusions that showed me that my life could be so much > >more and gave me hope again! All the symptoms have not yet > >reverted back to pre infusion status, but they are changing. That's > >what's so crazy, I responded exceptionally well to the infusions after > >using orals and combos first to lessen the bacterial load in my body. > >But it doesn't matter because some unnamed doctor a Yale reviewed > >my medical records and stated that treatment for the late stage Lyme > >Disease with neurological involvement, was " not a medical necessity " , > >and that's the end of the story. Regardless of how my own doctor's > >opinion, and the second opinion, plus an 8 " thick file and 20 year > >history plus Western Blot confirmation all show I've suffered so many > >years and NOTHING else has ever caused betterment except the > >antibiotic treatments for Lyme Disease. I was seronegative on ELISA > >which we all know means nothing. > > > > > >Doctors do not want to risk careers, tenure, homes, and they ability > >to earn a living, and who can blame them! We must continue our > >efforts in an accepted or unaccepted manner to get the truth out, in > >order to protect the few physician's who are compassionate and > >putting all on the line to treat people like us with Lyme Disease > >because no one else will bother to help us with the suffering and > >pain, both physical and emotional. We have to help get the truth > >out in order to help protect our physicians and in order to help > >ourselves. Maybe not something most of us can do daily, but when > >we have those better days from time to time, we can use those days > >to help promote Lyme Disease awareness. > > > >Over 50% of the new cases of Lyme Disease reported each year > >involve children, our most precious natural resource. And, as > >we all know, the reported cases are just a tip of the actual > >number of new cases because of the narrow guidelines put out > >by the CDC and because people just do not know about Lyme > >Disease, as there is very little awareness across the United States > >except within the Lyme community. I believe we have two major > >needs, to get the outdated CDC criteria changed through public > >outcry, but to do that we have to first make people aware that > >Lyme Disease is the fastest growing infectious disease that it > >is surpassing AIDS in the number of new cases each year. That > >means we must make " Lyme Awareness Now " a fact, not just something > >I put on my e-mails. We should all use some kind of organization > >name on our e-mails indicating the importance of Lyme Awareness Now! > >It's a beginning and we have to start somewhere. > > > >Wishing us all health and freedom from pain, > >both physical and emotional - > > > > > >C.Tab. wrote: > > > >> From: " C.Tab. " <tab@...> > >> > >> >Anyone ready to take a stand to STOP STEERE? > >> > > >> > >> Hi, > >> > >> Is there anything that we at out computers can do in addition to > suggesting > >> questions? > > > >>Send to -Offtopiconelist messages unrelated to lyme, please. > >/archive/lyme-aid > >/archives.cgi/Lyme-Documents > >To unsubscribe, send email to -unsubscribeonelist > >You may substitute " subscribe " , or " digest " or " normal " for > >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank > both the message and subject header. > > > > > Send to -Offtopiconelist messages unrelated to lyme, please. > /archive/lyme-aid > /archives.cgi/Lyme-Documents > To unsubscribe, send email to -unsubscribeonelist > You may substitute " subscribe " , or " digest " or " normal " for > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1999 Report Share Posted October 24, 1999 I forgot to post the URL http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html wrote: > From: <swsftwtx@...> > > Dear & All, > > How wonderful for you to think of doing this and having > contacts so it could possibly get published is a plus! > This is a Lyme URL someone very nice sent me that > has a plethora of Lyme information all in one spot! > All you have to do is go to this site and click on the > links and away you go. I can think of numerous articles > that will assist you in your proposed endeavor and if you > like I will be glad to send them to you as I find them > possibly on a daily basis or whatever you would like. > I cannot sit for long and use my computer and I overdid > it this morning with my angst while writing my post. > Let us know what you would like and I would imagine > between the members of this group we can provide > you with enough information for a book! > > Wishing us all health and freedom from pain, > both physical and emotional - > > beth Feldman wrote: > > > From: beth Feldman <elsbeth@...> > > > > and all, > > > > I was " lucky " in having a doctor who fairly quickly recognized my symptoms > > as late Lyme and " lucky " to have insurance that's so far agreed to pay for 8 > > weeks (and probably more) IV. So far, for me, it's been a breeze (aside from > > having to be my own doctor to figure out the best treatment and being > > terribly sick) But everyday stories like yours, , that appear in my > > emailbox, make me more and more enraged. > > > > How are Lyme activists organized? Is there one particular organization that > > is more action oriented? Are the various activists activities centralized? > > Is there a place where all the Steere shit (bull shit) has been catalogued? > > Is there an activist list like there is for CFIDS? > > > > I agree that a long article or book on the Steere story would be very > > valuable. I'm not a professional writer but I do have some writing > > experience and some hope of pitching an article to a major paper or magazine > > through some personal connections. I can imagine taking this on especially > > when my work schedule is trimmed back as it's been. The one thing I CAN do > > when I'm not too brain foggy is research and type away on my laptop, but I > > would need help gathering the material that many Lymies probably have filed > > away. > > > > Relatively speaking, I'm a newcomer to LD and I would be happy to work with > > anybody or group that's already organized or willing to start up something > > fresh. Footwork for me would be difficult simply because I live in > > California. > > > > Let me know what you think. > > > > beth > > Re: [Lyme-aid] STOP STEERE > > > > > From: <swsftwtx@...> > > > > > > My opinion on Steere is that he does have Lyme > > > and it affects his brain, causing him to be a > > > megalomaniac. If Steere didn't or doesn't think of > > > something, then of course it cannot possibly be true. > > > Think about it. Even in The Widening Circle, the > > > author relates how the military physician told Steere > > > he had good results using antibiotics with the military > > > personnel who had Lyme. Steere dismisses the whole > > > thing stating something to the effect that " he has tried > > > antibiotics, and they didn't work " , of course we know > > > he probably used for 10-14 days and who knows what > > > antibiotic he tried! I would love to find out who the > > > military physician was who used abx and found them > > > to be working to make the military personnel well, when > > > Lyme caught at onset. And, I'd love to find out if he > > > does treat Lyme in private practice now, assuming > > > he was not career military. He may have been career > > > and this is moot, but I sure would like to get his take on > > > Steere during the beginning of the investigation of the > > > mysterious illness re-named Lyme Disease due to the > > > community of Old Lyme CT having so many people sick > > > with the disease. > > > > > > All these years, Steere has steadfastly refused to accept > > > the scientific evidence published and available to read > > > and only accepts his own " ideas " and worn out mantra, > > > of over diagnosed and over treated. For a supposedly > > > intelligent man to ignore scientific evidence and repeat > > > his own mantra that does not have scientific basis, is > > > simply stupid and causing great harm to so many people. > > > I know some large portion of physicians are egocentric > > > but this takes the cake. > > > > > > I understand he has a forceful personality and speaks well > > > and there have been people like him throughout time who > > > have persuaded others to folly, even to causing great harm > > > to others. As we know, many but not all physician's do not > > > like changes, and it's always easier to maintain the status quo > > > than to go against the " old way of thinking and doing " things. > > > > > > This is an " opinion " not a fact regarding Steere's mental > > > debility. Yet, even greed and avarice do not fully explain > > > how he can blatantly lie year after year in the face of a > > > growing body of scientific evidence. That he's been given > > > the gold medal, and now this undeserved honor from the > > > NIH only speaks of how uninformed and uncaring the > > > entities are that awarded him these visible honors. In > > > my humble opinion, both Polly Murray and the other woman > > > who brought the number of juvenile arthritis cases given the > > > small population to the health department's attention are the > > > ones who deserve the accolades. Steere was simply doing > > > what he was supposed to be doing, and without Polly, I > > > doubt he would have even found out as much as he did about > > > LD, because he's so close minded and egocentric. > > > > > > No offense to any of the people on this list, but I am also > > > willing to bet that Steere is also on the short side, and may > > > suffer from this aspect who are shorter than average which > > > translates in to them being petty tyrants or unwilling to accept > > > information that they don't originate among other personality > > > traits. I just know that big bucks are involved and too > > > many people are making money from our suffering and pain. > > > It seems to me that the subject of a post I made recently > > > regarding Necessary Shift? is a way to dump Steere and his > > > over diagnosed and over treated mantra. Not that the good > > > doctors treating Lyme are abandoning us, far from it, but that > > > they are seeking ways to circumvent Steere and his clique of > > > non thinking scoyphants who continue to support and repeat > > > this worn out mantra of Steere's. > > > > > > After all, wasn't it reported that SKB dumped the Yale clinic > > > finally after not wanting to be associated with the clinic due to > > > the personnel's harsh treatment of Lyme patients, when reviewing > > > medical records and or treating them as their own patients. Yale > > > like the Mayo has a reputation that once meant something, but > > > corporate sponsorship of colleges has taken that integrity away. > > > > > > In the past year or so, the Mayo was publishing at their web site > > > that " opiates " (they probably used narcotics) should never be used > > > to treat intractable chronic pain. Some of us connected with a > > > chronic pain group sent e-mails stating that this was outdated and > > > incorrect information that due to the Mayo's stature world wide, > > > their misinformation on treatment of pain was preventing hundreds > > > of thousands of people world wide from receiving adequate pain > > > relief for intractable chronic pain because of the weight physician's > > > give to information coming from the Mayo. The Mayo and other > > > entities with this icon status MUST be truthful in what they publish > > > as they can cause great harm by merely having a web site that does > > > publish outdated incorrect information. If the people at these > > > bastions of credibility don't know the " truth " then they should be > > > willing to publish both sides of a controversy in medicine and held > > > accountable if they don't. I've read of so many people who went > > > to the Mayo for help with their pain because of the Mayo's icon > > > status and reputation only to be told to lean to live with the pain. > > > This is not acceptable treatment in this day and age. The same is > > > true for Lyme patients seeking help from the Mayo, as I understand > > > it the Mayo does not treat Lyme patients period. Someone please > > > correct me if this is not correct. > > > > > > Supporting documentation was sent along with the e-mails and > > > then sent snail mail, and the Mayo did indeed change the information > > > published at their web site. Maybe they were going to do it anyway, > > > I don't know, but these entities, larger than life, do indeed have a > > > moral responsibility to publish correct information even if they do > > > not agree with it per se. > > > > > > I believe in the power of the pen, too many times it's been proven > > > to me that it does work. Especially in this day and age when taking > > > pen in hand is not the norm anymore and form letters are accepted. > > > To take the time to write an opinion and support that opinion with > > > facts, I believe is a powerful statement. If we all do it, then it's an > > > even more powerful statement. We absolutely must not let web > > > sites get away with printing Steere's mantra, pointing out that it is > > > NOT based on scientific findings but personal opinion. We should > > > encourage the people writing medical columns at papers to read two > > > books at least, Coping With Lyme Disease-Second Edition, > > > Lang, and The Widening Circle, Polly Murray. I bought these two > > > books and gave them to my pain management physician who was > > > having a great deal of difficulty wrapping his mind around Lyme Disease > > > and the fact that it must be treated with higher dose and longer periods > > > of antibiotics. The pain doctor I had before him at the same clinic > > > understood the Lyme Disease dilemma, but we had a conflict so I > > > opted to see the physician I see now who didn't know much about > > > Lyme except what Steere had repeated ad nauseum. > > > > > > It seems to me that people do not stop to think about the fact that > > > the Baby Boomers and all who came after them have been fed a > > > steady diet of antibiotics in the cattle, swine, and poultry we have > > > utilized for food sources most of our lives. It only makes common > > > sense that should we get an especially difficult bacterial infection > > > that it would take more and longer doses of treatment to kill the > > > bacteria especially if it's been undiagnosed and untreated for many > > > years. I simply do not understand what is so difficult for the over > > > diagnosed and over treated bunch of idiots to understand about this > > > fact. > > > > > > I do believe that the money poured into the pockets of the naysayers > > > by insurance companies has more to do with the more accepted > > > minimal treatment of Lyme Disease than any other single factor. The > > > insurance companies (not all of them but far too many) just want to > > > increase their profits, and until HMO's became fact, it was much > > > easier to be treated for Lyme Disease, providing you had a Lyme > > > literate physician. Now, not only do the doctors have to be > > > concerned about their peers, they also have to be concerned about > > > the insurance companies and pharmacists turning them in for > > > malpractice to state medical boards simply because they are using the > > > only known treatment that works on Lyme Disease, antibiotics. > > > > > > My opinion is that they will find that antibiotics are the cure for > > > Lyme, but it will most probably be a class of antibiotic that has > > > not even been discovered to date. I had so many wonderful > > > changes in symptoms that had not changed throughout most of > > > my adult life when I was finally allowed to receive antibiotic > > > infusions. > > > > > > But, they were not long enough and I can't get approved again > > > and have already re-mortgaged my home, so there are no funds for > > > more antibiotic infusions that showed me that my life could be so much > > > more and gave me hope again! All the symptoms have not yet > > > reverted back to pre infusion status, but they are changing. That's > > > what's so crazy, I responded exceptionally well to the infusions after > > > using orals and combos first to lessen the bacterial load in my body. > > > But it doesn't matter because some unnamed doctor a Yale reviewed > > > my medical records and stated that treatment for the late stage Lyme > > > Disease with neurological involvement, was " not a medical necessity " , > > > and that's the end of the story. Regardless of how my own doctor's > > > opinion, and the second opinion, plus an 8 " thick file and 20 year > > > history plus Western Blot confirmation all show I've suffered so many > > > years and NOTHING else has ever caused betterment except the > > > antibiotic treatments for Lyme Disease. I was seronegative on ELISA > > > which we all know means nothing. > > > > > > > > > Doctors do not want to risk careers, tenure, homes, and they ability > > > to earn a living, and who can blame them! We must continue our > > > efforts in an accepted or unaccepted manner to get the truth out, in > > > order to protect the few physician's who are compassionate and > > > putting all on the line to treat people like us with Lyme Disease > > > because no one else will bother to help us with the suffering and > > > pain, both physical and emotional. We have to help get the truth > > > out in order to help protect our physicians and in order to help > > > ourselves. Maybe not something most of us can do daily, but when > > > we have those better days from time to time, we can use those days > > > to help promote Lyme Disease awareness. > > > > > > Over 50% of the new cases of Lyme Disease reported each year > > > involve children, our most precious natural resource. And, as > > > we all know, the reported cases are just a tip of the actual > > > number of new cases because of the narrow guidelines put out > > > by the CDC and because people just do not know about Lyme > > > Disease, as there is very little awareness across the United States > > > except within the Lyme community. I believe we have two major > > > needs, to get the outdated CDC criteria changed through public > > > outcry, but to do that we have to first make people aware that > > > Lyme Disease is the fastest growing infectious disease that it > > > is surpassing AIDS in the number of new cases each year. That > > > means we must make " Lyme Awareness Now " a fact, not just something > > > I put on my e-mails. We should all use some kind of organization > > > name on our e-mails indicating the importance of Lyme Awareness Now! > > > It's a beginning and we have to start somewhere. > > > > > > Wishing us all health and freedom from pain, > > > both physical and emotional - > > > > > > > > > C.Tab. wrote: > > > > > > > From: " C.Tab. " <tab@...> > > > > > > > > >Anyone ready to take a stand to STOP STEERE? > > > > > > > > > > > > > Hi, > > > > > > > > Is there anything that we at out computers can do in addition to > > suggesting > > > > questions? > > > > > > > Send to -Offtopiconelist messages unrelated to lyme, please. > > > /archive/lyme-aid > > > /archives.cgi/Lyme-Documents > > > To unsubscribe, send email to -unsubscribeonelist > > > You may substitute " subscribe " , or " digest " or " normal " for > > > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave > > blank both the message and subject header. > > > > > > > > Send to -Offtopiconelist messages unrelated to lyme, please. > > /archive/lyme-aid > > /archives.cgi/Lyme-Documents > > To unsubscribe, send email to -unsubscribeonelist > > You may substitute " subscribe " , or " digest " or " normal " for > > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > > > Send to -Offtopiconelist messages unrelated to lyme, please. > /archive/lyme-aid > /archives.cgi/Lyme-Documents > To unsubscribe, send email to -unsubscribeonelist > You may substitute " subscribe " , or " digest " or " normal " for > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1999 Report Share Posted October 24, 1999 Sorry, come to think of it, I no longer have any savings, our home has been re-mortgaged, our car is going on 6 years old, finally paid for, and there's nothing that I have that can be liquidated to pay a lawsuit, so I don't guess it really matters. As I stated I am expressing my opinion so, I should be allowed to have an opinion. What do you guys think? - wrote: > From: <swsftwtx@...> > > It is okay with me if you forward the article, as it > is my " opinion " regarding Steere's mental capacity > but I am wondering if I can be sued or if the person > with the web site can be sued for publishing this > article which of course is " speculation " regarding > Steere's mental state. I just would like for my > e-mail address to be left off any article, it is okay > to use my name, after all, there are zillions of s > and it's okay to use my state Texas. I would prefer > not to use my city, but if it's necessary because I > don't want my e-mail addy printed that's okay, > it's Fort Worth. > > As long as it's printed in it's entirety without any > changes I have no problem. - > > Vicki & Ferraro (home) wrote: > > > From: " Vicki & Ferraro (home) " <ferraroa@...> > > > > , > > > > I think you should try to get this letter you just wrote, published. It > > covers a lot of information very concisely. I enjoyed reading it, and wished > > I could write as well as you do. Obviously, your Brain Fog isn't back, or > > wasn't when you wrote all this. What a wonderful post. > > > > Did I tell you there is a man at www.lymeaid.org on the flash (support > > group) trying to collect articles for a new website he is building. I would > > like to send this post to him, or you can, let me know. I really think the > > things you said covered so much, that it would be a great article for the > > site. > > Please let me know if I can send it to him, or if you would like to know > > more about how to contact him. > > Vicki > > Vicki > > Re: [Lyme-aid] STOP STEERE > > > > >From: <swsftwtx@...> > > > > > >My opinion on Steere is that he does have Lyme > > >and it affects his brain, causing him to be a > > >megalomaniac. If Steere didn't or doesn't think of > > >something, then of course it cannot possibly be true. > > >Think about it. Even in The Widening Circle, the > > >author relates how the military physician told Steere > > >he had good results using antibiotics with the military > > >personnel who had Lyme. Steere dismisses the whole > > >thing stating something to the effect that " he has tried > > >antibiotics, and they didn't work " , of course we know > > >he probably used for 10-14 days and who knows what > > >antibiotic he tried! I would love to find out who the > > >military physician was who used abx and found them > > >to be working to make the military personnel well, when > > >Lyme caught at onset. And, I'd love to find out if he > > >does treat Lyme in private practice now, assuming > > >he was not career military. He may have been career > > >and this is moot, but I sure would like to get his take on > > >Steere during the beginning of the investigation of the > > >mysterious illness re-named Lyme Disease due to the > > >community of Old Lyme CT having so many people sick > > >with the disease. > > > > > >All these years, Steere has steadfastly refused to accept > > >the scientific evidence published and available to read > > >and only accepts his own " ideas " and worn out mantra, > > >of over diagnosed and over treated. For a supposedly > > >intelligent man to ignore scientific evidence and repeat > > >his own mantra that does not have scientific basis, is > > >simply stupid and causing great harm to so many people. > > >I know some large portion of physicians are egocentric > > >but this takes the cake. > > > > > >I understand he has a forceful personality and speaks well > > >and there have been people like him throughout time who > > >have persuaded others to folly, even to causing great harm > > >to others. As we know, many but not all physician's do not > > >like changes, and it's always easier to maintain the status quo > > >than to go against the " old way of thinking and doing " things. > > > > > >This is an " opinion " not a fact regarding Steere's mental > > >debility. Yet, even greed and avarice do not fully explain > > >how he can blatantly lie year after year in the face of a > > >growing body of scientific evidence. That he's been given > > >the gold medal, and now this undeserved honor from the > > >NIH only speaks of how uninformed and uncaring the > > >entities are that awarded him these visible honors. In > > >my humble opinion, both Polly Murray and the other woman > > >who brought the number of juvenile arthritis cases given the > > >small population to the health department's attention are the > > >ones who deserve the accolades. Steere was simply doing > > >what he was supposed to be doing, and without Polly, I > > >doubt he would have even found out as much as he did about > > >LD, because he's so close minded and egocentric. > > > > > >No offense to any of the people on this list, but I am also > > >willing to bet that Steere is also on the short side, and may > > >suffer from this aspect who are shorter than average which > > >translates in to them being petty tyrants or unwilling to accept > > >information that they don't originate among other personality > > >traits. I just know that big bucks are involved and too > > >many people are making money from our suffering and pain. > > >It seems to me that the subject of a post I made recently > > >regarding Necessary Shift? is a way to dump Steere and his > > >over diagnosed and over treated mantra. Not that the good > > >doctors treating Lyme are abandoning us, far from it, but that > > >they are seeking ways to circumvent Steere and his clique of > > >non thinking scoyphants who continue to support and repeat > > >this worn out mantra of Steere's. > > > > > >After all, wasn't it reported that SKB dumped the Yale clinic > > >finally after not wanting to be associated with the clinic due to > > >the personnel's harsh treatment of Lyme patients, when reviewing > > >medical records and or treating them as their own patients. Yale > > >like the Mayo has a reputation that once meant something, but > > >corporate sponsorship of colleges has taken that integrity away. > > > > > >In the past year or so, the Mayo was publishing at their web site > > >that " opiates " (they probably used narcotics) should never be used > > >to treat intractable chronic pain. Some of us connected with a > > >chronic pain group sent e-mails stating that this was outdated and > > >incorrect information that due to the Mayo's stature world wide, > > >their misinformation on treatment of pain was preventing hundreds > > >of thousands of people world wide from receiving adequate pain > > >relief for intractable chronic pain because of the weight physician's > > >give to information coming from the Mayo. The Mayo and other > > >entities with this icon status MUST be truthful in what they publish > > >as they can cause great harm by merely having a web site that does > > >publish outdated incorrect information. If the people at these > > >bastions of credibility don't know the " truth " then they should be > > >willing to publish both sides of a controversy in medicine and held > > >accountable if they don't. I've read of so many people who went > > >to the Mayo for help with their pain because of the Mayo's icon > > >status and reputation only to be told to lean to live with the pain. > > >This is not acceptable treatment in this day and age. The same is > > >true for Lyme patients seeking help from the Mayo, as I understand > > >it the Mayo does not treat Lyme patients period. Someone please > > >correct me if this is not correct. > > > > > >Supporting documentation was sent along with the e-mails and > > >then sent snail mail, and the Mayo did indeed change the information > > >published at their web site. Maybe they were going to do it anyway, > > >I don't know, but these entities, larger than life, do indeed have a > > >moral responsibility to publish correct information even if they do > > >not agree with it per se. > > > > > >I believe in the power of the pen, too many times it's been proven > > >to me that it does work. Especially in this day and age when taking > > >pen in hand is not the norm anymore and form letters are accepted. > > >To take the time to write an opinion and support that opinion with > > >facts, I believe is a powerful statement. If we all do it, then it's an > > >even more powerful statement. We absolutely must not let web > > >sites get away with printing Steere's mantra, pointing out that it is > > >NOT based on scientific findings but personal opinion. We should > > >encourage the people writing medical columns at papers to read two > > >books at least, Coping With Lyme Disease-Second Edition, > > >Lang, and The Widening Circle, Polly Murray. I bought these two > > >books and gave them to my pain management physician who was > > >having a great deal of difficulty wrapping his mind around Lyme Disease > > >and the fact that it must be treated with higher dose and longer periods > > >of antibiotics. The pain doctor I had before him at the same clinic > > >understood the Lyme Disease dilemma, but we had a conflict so I > > >opted to see the physician I see now who didn't know much about > > >Lyme except what Steere had repeated ad nauseum. > > > > > >It seems to me that people do not stop to think about the fact that > > >the Baby Boomers and all who came after them have been fed a > > >steady diet of antibiotics in the cattle, swine, and poultry we have > > >utilized for food sources most of our lives. It only makes common > > >sense that should we get an especially difficult bacterial infection > > >that it would take more and longer doses of treatment to kill the > > >bacteria especially if it's been undiagnosed and untreated for many > > >years. I simply do not understand what is so difficult for the over > > >diagnosed and over treated bunch of idiots to understand about this > > >fact. > > > > > >I do believe that the money poured into the pockets of the naysayers > > >by insurance companies has more to do with the more accepted > > >minimal treatment of Lyme Disease than any other single factor. The > > >insurance companies (not all of them but far too many) just want to > > >increase their profits, and until HMO's became fact, it was much > > >easier to be treated for Lyme Disease, providing you had a Lyme > > >literate physician. Now, not only do the doctors have to be > > >concerned about their peers, they also have to be concerned about > > >the insurance companies and pharmacists turning them in for > > >malpractice to state medical boards simply because they are using the > > >only known treatment that works on Lyme Disease, antibiotics. > > > > > >My opinion is that they will find that antibiotics are the cure for > > >Lyme, but it will most probably be a class of antibiotic that has > > >not even been discovered to date. I had so many wonderful > > >changes in symptoms that had not changed throughout most of > > >my adult life when I was finally allowed to receive antibiotic > > >infusions. > > > > > >But, they were not long enough and I can't get approved again > > >and have already re-mortgaged my home, so there are no funds for > > >more antibiotic infusions that showed me that my life could be so much > > >more and gave me hope again! All the symptoms have not yet > > >reverted back to pre infusion status, but they are changing. That's > > >what's so crazy, I responded exceptionally well to the infusions after > > >using orals and combos first to lessen the bacterial load in my body. > > >But it doesn't matter because some unnamed doctor a Yale reviewed > > >my medical records and stated that treatment for the late stage Lyme > > >Disease with neurological involvement, was " not a medical necessity " , > > >and that's the end of the story. Regardless of how my own doctor's > > >opinion, and the second opinion, plus an 8 " thick file and 20 year > > >history plus Western Blot confirmation all show I've suffered so many > > >years and NOTHING else has ever caused betterment except the > > >antibiotic treatments for Lyme Disease. I was seronegative on ELISA > > >which we all know means nothing. > > > > > > > > >Doctors do not want to risk careers, tenure, homes, and they ability > > >to earn a living, and who can blame them! We must continue our > > >efforts in an accepted or unaccepted manner to get the truth out, in > > >order to protect the few physician's who are compassionate and > > >putting all on the line to treat people like us with Lyme Disease > > >because no one else will bother to help us with the suffering and > > >pain, both physical and emotional. We have to help get the truth > > >out in order to help protect our physicians and in order to help > > >ourselves. Maybe not something most of us can do daily, but when > > >we have those better days from time to time, we can use those days > > >to help promote Lyme Disease awareness. > > > > > >Over 50% of the new cases of Lyme Disease reported each year > > >involve children, our most precious natural resource. And, as > > >we all know, the reported cases are just a tip of the actual > > >number of new cases because of the narrow guidelines put out > > >by the CDC and because people just do not know about Lyme > > >Disease, as there is very little awareness across the United States > > >except within the Lyme community. I believe we have two major > > >needs, to get the outdated CDC criteria changed through public > > >outcry, but to do that we have to first make people aware that > > >Lyme Disease is the fastest growing infectious disease that it > > >is surpassing AIDS in the number of new cases each year. That > > >means we must make " Lyme Awareness Now " a fact, not just something > > >I put on my e-mails. We should all use some kind of organization > > >name on our e-mails indicating the importance of Lyme Awareness Now! > > >It's a beginning and we have to start somewhere. > > > > > >Wishing us all health and freedom from pain, > > >both physical and emotional - > > > > > > > > >C.Tab. wrote: > > > > > >> From: " C.Tab. " <tab@...> > > >> > > >> >Anyone ready to take a stand to STOP STEERE? > > >> > > > >> > > >> Hi, > > >> > > >> Is there anything that we at out computers can do in addition to > > suggesting > > >> questions? > > > > > >>Send to -Offtopiconelist messages unrelated to lyme, please. > > >/archive/lyme-aid > > >/archives.cgi/Lyme-Documents > > >To unsubscribe, send email to -unsubscribeonelist > > >You may substitute " subscribe " , or " digest " or " normal " for > > >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank > > both the message and subject header. > > > > > > > > Send to -Offtopiconelist messages unrelated to lyme, please. > > /archive/lyme-aid > > /archives.cgi/Lyme-Documents > > To unsubscribe, send email to -unsubscribeonelist > > You may substitute " subscribe " , or " digest " or " normal " for > > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > > > Send to -Offtopiconelist messages unrelated to lyme, please. > /archive/lyme-aid > /archives.cgi/Lyme-Documents > To unsubscribe, send email to -unsubscribeonelist > You may substitute " subscribe " , or " digest " or " normal " for > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1999 Report Share Posted October 25, 1999 beth, I personally like the Lyme Alliance for organizing Lyme activism. They have a strong view about getting to the truth of Lyme, whatever that truth may be. Even if it hurts some feelings along the way. They have been very active in the courts by getting an " Amicus Brief " written. An Amicus Brief is a document that can be submitted to a court by a third party not involved with the particular case. This Amicus Brief has helped us Lymies in more ways than we will ever know. The Lyme Alliance is also into staging protests and upsetting the status quo we see too often in Lyme land. You can learn more about then at www.lymealliance.org Robynn Re: [Lyme-aid] STOP STEERE > From: beth Feldman <elsbeth@...> > > and all, > How are Lyme activists organized? Is there one particular organization that > is more action oriented? Are the various activists activities centralized? > Is there a place where all the Steere shit (bull shit) has been catalogued? > Is there an activist list like there is for CFIDS? > > Relatively speaking, I'm a newcomer to LD and I would be happy to work with > anybody or group that's already organized or willing to start up something > fresh. Footwork for me would be difficult simply because I live in > California. > > Let me know what you think. > > beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1999 Report Share Posted October 25, 1999 The correct website for is http://www2.Lymenet.org When you get to the home page, move down reference site on left side of page to FLASH, click, go to bottom of page and select Search the Flash, at the next page select 50or100 sites, oldest, then type in , then Submit. Hope this helps. Lovey On Sun, 24 Oct 1999 13:09:40 -0400 " Vicki & Ferraro (home) " <ferraroa@...> writes: > From: " Vicki & Ferraro (home) " <ferraroa@...> > > beth, > > With your talent and all the wonderful professional advice you give, > I think > if you just started writing letters and keep on sending them, to the > senate, > (especially Kennedy' camp) and CDC, that would be wonderful. Also, > can you > read a post from ' " at www.lymeaid.org and to the left go to > flash, > then search " " , and choose 50, you will see something about a > Web Site > he is putting together and looking for writers. He is hoping it can > be used > to educate employers, friends, etc. It may help if you could write > something > there, his post may be entitled, something like " Looking for > Writers " . If > you are interested, but have trouble finding it, let me know and I > can help > further. > > Thanks Vicki > Re: [Lyme-aid] STOP STEERE > > > >From: beth Feldman <elsbeth@...> > > > > and all, > > > >I was " lucky " in having a doctor who fairly quickly recognized my > symptoms > >as late Lyme and " lucky " to have insurance that's so far agreed to > pay for > 8 > >weeks (and probably more) IV. So far, for me, it's been a breeze > (aside > from > >having to be my own doctor to figure out the best treatment and > being > >terribly sick) But everyday stories like yours, , that appear > in my > >emailbox, make me more and more enraged. > > > >How are Lyme activists organized? Is there one particular > organization that > >is more action oriented? Are the various activists activities > centralized? > >Is there a place where all the Steere shit (bull shit) has been > catalogued? > >Is there an activist list like there is for CFIDS? > > > >I agree that a long article or book on the Steere story would be > very > >valuable. I'm not a professional writer but I do have some writing > >experience and some hope of pitching an article to a major paper or > magazine > >through some personal connections. I can imagine taking this on > especially > >when my work schedule is trimmed back as it's been. The one thing I > CAN do > >when I'm not too brain foggy is research and type away on my > laptop, but I > >would need help gathering the material that many Lymies probably > have filed > >away. > > > >Relatively speaking, I'm a newcomer to LD and I would be happy to > work with > >anybody or group that's already organized or willing to start up > something > >fresh. Footwork for me would be difficult simply because I live in > >California. > > > >Let me know what you think. > > > >beth > > Re: [Lyme-aid] STOP STEERE > > > > > >> From: <swsftwtx@...> > >> > >> My opinion on Steere is that he does have Lyme > >> and it affects his brain, causing him to be a > >> megalomaniac. If Steere didn't or doesn't think of > >> something, then of course it cannot possibly be true. > >> Think about it. Even in The Widening Circle, the > >> author relates how the military physician told Steere > >> he had good results using antibiotics with the military > >> personnel who had Lyme. Steere dismisses the whole > >> thing stating something to the effect that " he has tried > >> antibiotics, and they didn't work " , of course we know > >> he probably used for 10-14 days and who knows what > >> antibiotic he tried! I would love to find out who the > >> military physician was who used abx and found them > >> to be working to make the military personnel well, when > >> Lyme caught at onset. And, I'd love to find out if he > >> does treat Lyme in private practice now, assuming > >> he was not career military. He may have been career > >> and this is moot, but I sure would like to get his take on > >> Steere during the beginning of the investigation of the > >> mysterious illness re-named Lyme Disease due to the > >> community of Old Lyme CT having so many people sick > >> with the disease. > >> > >> All these years, Steere has steadfastly refused to accept > >> the scientific evidence published and available to read > >> and only accepts his own " ideas " and worn out mantra, > >> of over diagnosed and over treated. For a supposedly > >> intelligent man to ignore scientific evidence and repeat > >> his own mantra that does not have scientific basis, is > >> simply stupid and causing great harm to so many people. > >> I know some large portion of physicians are egocentric > >> but this takes the cake. > >> > >> I understand he has a forceful personality and speaks well > >> and there have been people like him throughout time who > >> have persuaded others to folly, even to causing great harm > >> to others. As we know, many but not all physician's do not > >> like changes, and it's always easier to maintain the status quo > >> than to go against the " old way of thinking and doing " things. > >> > >> This is an " opinion " not a fact regarding Steere's mental > >> debility. Yet, even greed and avarice do not fully explain > >> how he can blatantly lie year after year in the face of a > >> growing body of scientific evidence. That he's been given > >> the gold medal, and now this undeserved honor from the > >> NIH only speaks of how uninformed and uncaring the > >> entities are that awarded him these visible honors. In > >> my humble opinion, both Polly Murray and the other woman > >> who brought the number of juvenile arthritis cases given the > >> small population to the health department's attention are the > >> ones who deserve the accolades. Steere was simply doing > >> what he was supposed to be doing, and without Polly, I > >> doubt he would have even found out as much as he did about > >> LD, because he's so close minded and egocentric. > >> > >> No offense to any of the people on this list, but I am also > >> willing to bet that Steere is also on the short side, and may > >> suffer from this aspect who are shorter than average which > >> translates in to them being petty tyrants or unwilling to accept > >> information that they don't originate among other personality > >> traits. I just know that big bucks are involved and too > >> many people are making money from our suffering and pain. > >> It seems to me that the subject of a post I made recently > >> regarding Necessary Shift? is a way to dump Steere and his > >> over diagnosed and over treated mantra. Not that the good > >> doctors treating Lyme are abandoning us, far from it, but that > >> they are seeking ways to circumvent Steere and his clique of > >> non thinking scoyphants who continue to support and repeat > >> this worn out mantra of Steere's. > >> > >> After all, wasn't it reported that SKB dumped the Yale clinic > >> finally after not wanting to be associated with the clinic due to > >> the personnel's harsh treatment of Lyme patients, when reviewing > >> medical records and or treating them as their own patients. Yale > >> like the Mayo has a reputation that once meant something, but > >> corporate sponsorship of colleges has taken that integrity away. > >> > >> In the past year or so, the Mayo was publishing at their web site > >> that " opiates " (they probably used narcotics) should never be used > >> to treat intractable chronic pain. Some of us connected with a > >> chronic pain group sent e-mails stating that this was outdated and > >> incorrect information that due to the Mayo's stature world wide, > >> their misinformation on treatment of pain was preventing hundreds > >> of thousands of people world wide from receiving adequate pain > >> relief for intractable chronic pain because of the weight > physician's > >> give to information coming from the Mayo. The Mayo and other > >> entities with this icon status MUST be truthful in what they > publish > >> as they can cause great harm by merely having a web site that does > >> publish outdated incorrect information. If the people at these > >> bastions of credibility don't know the " truth " then they should be > >> willing to publish both sides of a controversy in medicine and > held > >> accountable if they don't. I've read of so many people who went > >> to the Mayo for help with their pain because of the Mayo's icon > >> status and reputation only to be told to lean to live with the > pain. > >> This is not acceptable treatment in this day and age. The same is > >> true for Lyme patients seeking help from the Mayo, as I understand > >> it the Mayo does not treat Lyme patients period. Someone please > >> correct me if this is not correct. > >> > >> Supporting documentation was sent along with the e-mails and > >> then sent snail mail, and the Mayo did indeed change the > information > >> published at their web site. Maybe they were going to do it > anyway, > >> I don't know, but these entities, larger than life, do indeed > have a > >> moral responsibility to publish correct information even if they > do > >> not agree with it per se. > >> > >> I believe in the power of the pen, too many times it's been proven > >> to me that it does work. Especially in this day and age when > taking > >> pen in hand is not the norm anymore and form letters are accepted. > >> To take the time to write an opinion and support that opinion with > >> facts, I believe is a powerful statement. If we all do it, then > it's an > >> even more powerful statement. We absolutely must not let web > >> sites get away with printing Steere's mantra, pointing out that > it is > >> NOT based on scientific findings but personal opinion. We should > >> encourage the people writing medical columns at papers to read two > >> books at least, Coping With Lyme Disease-Second Edition, > >> Lang, and The Widening Circle, Polly Murray. I bought these two > >> books and gave them to my pain management physician who was > >> having a great deal of difficulty wrapping his mind around Lyme > Disease > >> and the fact that it must be treated with higher dose and longer > periods > >> of antibiotics. The pain doctor I had before him at the same > clinic > >> understood the Lyme Disease dilemma, but we had a conflict so I > >> opted to see the physician I see now who didn't know much about > >> Lyme except what Steere had repeated ad nauseum. > >> > >> It seems to me that people do not stop to think about the fact > that > >> the Baby Boomers and all who came after them have been fed a > >> steady diet of antibiotics in the cattle, swine, and poultry we > have > >> utilized for food sources most of our lives. It only makes common > >> sense that should we get an especially difficult bacterial > infection > >> that it would take more and longer doses of treatment to kill the > >> bacteria especially if it's been undiagnosed and untreated for > many > >> years. I simply do not understand what is so difficult for the > over > >> diagnosed and over treated bunch of idiots to understand about > this > >> fact. > >> > >> I do believe that the money poured into the pockets of the > naysayers > >> by insurance companies has more to do with the more accepted > >> minimal treatment of Lyme Disease than any other single factor. > The > >> insurance companies (not all of them but far too many) just want > to > >> increase their profits, and until HMO's became fact, it was much > >> easier to be treated for Lyme Disease, providing you had a Lyme > >> literate physician. Now, not only do the doctors have to be > >> concerned about their peers, they also have to be concerned about > >> the insurance companies and pharmacists turning them in for > >> malpractice to state medical boards simply because they are using > the > >> only known treatment that works on Lyme Disease, antibiotics. > >> > >> My opinion is that they will find that antibiotics are the cure > for > >> Lyme, but it will most probably be a class of antibiotic that has > >> not even been discovered to date. I had so many wonderful > >> changes in symptoms that had not changed throughout most of > >> my adult life when I was finally allowed to receive antibiotic > >> infusions. > >> > >> But, they were not long enough and I can't get approved again > >> and have already re-mortgaged my home, so there are no funds for > >> more antibiotic infusions that showed me that my life could be so > much > >> more and gave me hope again! All the symptoms have not yet > >> reverted back to pre infusion status, but they are changing. > That's > >> what's so crazy, I responded exceptionally well to the infusions > after > >> using orals and combos first to lessen the bacterial load in my > body. > >> But it doesn't matter because some unnamed doctor a Yale reviewed > >> my medical records and stated that treatment for the late stage > Lyme > >> Disease with neurological involvement, was " not a medical > necessity " , > >> and that's the end of the story. Regardless of how my own > doctor's > >> opinion, and the second opinion, plus an 8 " thick file and 20 year > >> history plus Western Blot confirmation all show I've suffered so > many > >> years and NOTHING else has ever caused betterment except the > >> antibiotic treatments for Lyme Disease. I was seronegative on > ELISA > >> which we all know means nothing. > >> > >> > >> Doctors do not want to risk careers, tenure, homes, and they > ability > >> to earn a living, and who can blame them! We must continue our > >> efforts in an accepted or unaccepted manner to get the truth out, > in > >> order to protect the few physician's who are compassionate and > >> putting all on the line to treat people like us with Lyme Disease > >> because no one else will bother to help us with the suffering and > >> pain, both physical and emotional. We have to help get the truth > >> out in order to help protect our physicians and in order to help > >> ourselves. Maybe not something most of us can do daily, but when > >> we have those better days from time to time, we can use those days > >> to help promote Lyme Disease awareness. > >> > >> Over 50% of the new cases of Lyme Disease reported each year > >> involve children, our most precious natural resource. And, as > >> we all know, the reported cases are just a tip of the actual > >> number of new cases because of the narrow guidelines put out > >> by the CDC and because people just do not know about Lyme > >> Disease, as there is very little awareness across the United > States > >> except within the Lyme community. I believe we have two major > >> needs, to get the outdated CDC criteria changed through public > >> outcry, but to do that we have to first make people aware that > >> Lyme Disease is the fastest growing infectious disease that it > >> is surpassing AIDS in the number of new cases each year. That > >> means we must make " Lyme Awareness Now " a fact, not just something > >> I put on my e-mails. We should all use some kind of organization > >> name on our e-mails indicating the importance of Lyme Awareness > Now! > >> It's a beginning and we have to start somewhere. > >> > >> Wishing us all health and freedom from pain, > >> both physical and emotional - > >> > >> > >> C.Tab. wrote: > >> > >> > From: " C.Tab. " <tab@...> > >> > > >> > >Anyone ready to take a stand to STOP STEERE? > >> > > > >> > > >> > Hi, > >> > > >> > Is there anything that we at out computers can do in addition to > >suggesting > >> > questions? > >> > >> > Send to -Offtopiconelist messages unrelated to > lyme, > please. > >> /archive/lyme-aid > >> /archives.cgi/Lyme-Documents > >> To unsubscribe, send email to -unsubscribeonelist > >> You may substitute " subscribe " , or " digest " or " normal " for > >> the word " unsubscribe " ( " normal " is the opposite of " digest " ). > Leave > >blank both the message and subject header. > >> > > > >>Send to -Offtopiconelist messages unrelated to lyme, > please. > >/archive/lyme-aid > >/archives.cgi/Lyme-Documents > >To unsubscribe, send email to -unsubscribeonelist > >You may substitute " subscribe " , or " digest " or " normal " for > >the word " unsubscribe " ( " normal " is the opposite of " digest " ). > Leave blank > both the message and subject header. > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1999 Report Share Posted October 25, 1999 Let's not forget Ramp's excellent article " The Dirty Truth about Lyme disease " http://www.angelfire.com/biz/romarkaraoke/Lymetruth.html Art Doherty has tons of information at: http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html Best to you all, Marta NJ Subject: Re: [Lyme-aid] STOP STEERE >From: <swsftwtx@...> > >Dear & All, > >How wonderful for you to think of doing this and having >contacts so it could possibly get published is a plus! >This is a Lyme URL someone very nice sent me that >has a plethora of Lyme information all in one spot! >All you have to do is go to this site and click on the >links and away you go. I can think of numerous articles >that will assist you in your proposed endeavor and if you >like I will be glad to send them to you as I find them >possibly on a daily basis or whatever you would like. >I cannot sit for long and use my computer and I overdid >it this morning with my angst while writing my post. >Let us know what you would like and I would imagine >between the members of this group we can provide >you with enough information for a book! > >Wishing us all health and freedom from pain, >both physical and emotional - > >beth Feldman wrote: > >> From: beth Feldman <elsbeth@...> >> >> and all, >> >> I was " lucky " in having a doctor who fairly quickly recognized my symptoms >> as late Lyme and " lucky " to have insurance that's so far agreed to pay for 8 >> weeks (and probably more) IV. So far, for me, it's been a breeze (aside from >> having to be my own doctor to figure out the best treatment and being >> terribly sick) But everyday stories like yours, , that appear in my >> emailbox, make me more and more enraged. >> >> How are Lyme activists organized? Is there one particular organization that >> is more action oriented? Are the various activists activities centralized? >> Is there a place where all the Steere shit (bull shit) has been catalogued? >> Is there an activist list like there is for CFIDS? >> >> I agree that a long article or book on the Steere story would be very >> valuable. I'm not a professional writer but I do have some writing >> experience and some hope of pitching an article to a major paper or magazine >> through some personal connections. I can imagine taking this on especially >> when my work schedule is trimmed back as it's been. The one thing I CAN do >> when I'm not too brain foggy is research and type away on my laptop, but I >> would need help gathering the material that many Lymies probably have filed >> away. >> >> Relatively speaking, I'm a newcomer to LD and I would be happy to work with >> anybody or group that's already organized or willing to start up something >> fresh. Footwork for me would be difficult simply because I live in >> California. >> >> Let me know what you think. >> >> beth >> Re: [Lyme-aid] STOP STEERE >> >> > From: <swsftwtx@...> >> > >> > My opinion on Steere is that he does have Lyme >> > and it affects his brain, causing him to be a >> > megalomaniac. If Steere didn't or doesn't think of >> > something, then of course it cannot possibly be true. >> > Think about it. Even in The Widening Circle, the >> > author relates how the military physician told Steere >> > he had good results using antibiotics with the military >> > personnel who had Lyme. Steere dismisses the whole >> > thing stating something to the effect that " he has tried >> > antibiotics, and they didn't work " , of course we know >> > he probably used for 10-14 days and who knows what >> > antibiotic he tried! I would love to find out who the >> > military physician was who used abx and found them >> > to be working to make the military personnel well, when >> > Lyme caught at onset. And, I'd love to find out if he >> > does treat Lyme in private practice now, assuming >> > he was not career military. He may have been career >> > and this is moot, but I sure would like to get his take on >> > Steere during the beginning of the investigation of the >> > mysterious illness re-named Lyme Disease due to the >> > community of Old Lyme CT having so many people sick >> > with the disease. >> > >> > All these years, Steere has steadfastly refused to accept >> > the scientific evidence published and available to read >> > and only accepts his own " ideas " and worn out mantra, >> > of over diagnosed and over treated. For a supposedly >> > intelligent man to ignore scientific evidence and repeat >> > his own mantra that does not have scientific basis, is >> > simply stupid and causing great harm to so many people. >> > I know some large portion of physicians are egocentric >> > but this takes the cake. >> > >> > I understand he has a forceful personality and speaks well >> > and there have been people like him throughout time who >> > have persuaded others to folly, even to causing great harm >> > to others. As we know, many but not all physician's do not >> > like changes, and it's always easier to maintain the status quo >> > than to go against the " old way of thinking and doing " things. >> > >> > This is an " opinion " not a fact regarding Steere's mental >> > debility. Yet, even greed and avarice do not fully explain >> > how he can blatantly lie year after year in the face of a >> > growing body of scientific evidence. That he's been given >> > the gold medal, and now this undeserved honor from the >> > NIH only speaks of how uninformed and uncaring the >> > entities are that awarded him these visible honors. In >> > my humble opinion, both Polly Murray and the other woman >> > who brought the number of juvenile arthritis cases given the >> > small population to the health department's attention are the >> > ones who deserve the accolades. Steere was simply doing >> > what he was supposed to be doing, and without Polly, I >> > doubt he would have even found out as much as he did about >> > LD, because he's so close minded and egocentric. >> > >> > No offense to any of the people on this list, but I am also >> > willing to bet that Steere is also on the short side, and may >> > suffer from this aspect who are shorter than average which >> > translates in to them being petty tyrants or unwilling to accept >> > information that they don't originate among other personality >> > traits. I just know that big bucks are involved and too >> > many people are making money from our suffering and pain. >> > It seems to me that the subject of a post I made recently >> > regarding Necessary Shift? is a way to dump Steere and his >> > over diagnosed and over treated mantra. Not that the good >> > doctors treating Lyme are abandoning us, far from it, but that >> > they are seeking ways to circumvent Steere and his clique of >> > non thinking scoyphants who continue to support and repeat >> > this worn out mantra of Steere's. >> > >> > After all, wasn't it reported that SKB dumped the Yale clinic >> > finally after not wanting to be associated with the clinic due to >> > the personnel's harsh treatment of Lyme patients, when reviewing >> > medical records and or treating them as their own patients. Yale >> > like the Mayo has a reputation that once meant something, but >> > corporate sponsorship of colleges has taken that integrity away. >> > >> > In the past year or so, the Mayo was publishing at their web site >> > that " opiates " (they probably used narcotics) should never be used >> > to treat intractable chronic pain. Some of us connected with a >> > chronic pain group sent e-mails stating that this was outdated and >> > incorrect information that due to the Mayo's stature world wide, >> > their misinformation on treatment of pain was preventing hundreds >> > of thousands of people world wide from receiving adequate pain >> > relief for intractable chronic pain because of the weight physician's >> > give to information coming from the Mayo. The Mayo and other >> > entities with this icon status MUST be truthful in what they publish >> > as they can cause great harm by merely having a web site that does >> > publish outdated incorrect information. If the people at these >> > bastions of credibility don't know the " truth " then they should be >> > willing to publish both sides of a controversy in medicine and held >> > accountable if they don't. I've read of so many people who went >> > to the Mayo for help with their pain because of the Mayo's icon >> > status and reputation only to be told to lean to live with the pain. >> > This is not acceptable treatment in this day and age. The same is >> > true for Lyme patients seeking help from the Mayo, as I understand >> > it the Mayo does not treat Lyme patients period. Someone please >> > correct me if this is not correct. >> > >> > Supporting documentation was sent along with the e-mails and >> > then sent snail mail, and the Mayo did indeed change the information >> > published at their web site. Maybe they were going to do it anyway, >> > I don't know, but these entities, larger than life, do indeed have a >> > moral responsibility to publish correct information even if they do >> > not agree with it per se. >> > >> > I believe in the power of the pen, too many times it's been proven >> > to me that it does work. Especially in this day and age when taking >> > pen in hand is not the norm anymore and form letters are accepted. >> > To take the time to write an opinion and support that opinion with >> > facts, I believe is a powerful statement. If we all do it, then it's an >> > even more powerful statement. We absolutely must not let web >> > sites get away with printing Steere's mantra, pointing out that it is >> > NOT based on scientific findings but personal opinion. We should >> > encourage the people writing medical columns at papers to read two >> > books at least, Coping With Lyme Disease-Second Edition, >> > Lang, and The Widening Circle, Polly Murray. I bought these two >> > books and gave them to my pain management physician who was >> > having a great deal of difficulty wrapping his mind around Lyme Disease >> > and the fact that it must be treated with higher dose and longer periods >> > of antibiotics. The pain doctor I had before him at the same clinic >> > understood the Lyme Disease dilemma, but we had a conflict so I >> > opted to see the physician I see now who didn't know much about >> > Lyme except what Steere had repeated ad nauseum. >> > >> > It seems to me that people do not stop to think about the fact that >> > the Baby Boomers and all who came after them have been fed a >> > steady diet of antibiotics in the cattle, swine, and poultry we have >> > utilized for food sources most of our lives. It only makes common >> > sense that should we get an especially difficult bacterial infection >> > that it would take more and longer doses of treatment to kill the >> > bacteria especially if it's been undiagnosed and untreated for many >> > years. I simply do not understand what is so difficult for the over >> > diagnosed and over treated bunch of idiots to understand about this >> > fact. >> > >> > I do believe that the money poured into the pockets of the naysayers >> > by insurance companies has more to do with the more accepted >> > minimal treatment of Lyme Disease than any other single factor. The >> > insurance companies (not all of them but far too many) just want to >> > increase their profits, and until HMO's became fact, it was much >> > easier to be treated for Lyme Disease, providing you had a Lyme >> > literate physician. Now, not only do the doctors have to be >> > concerned about their peers, they also have to be concerned about >> > the insurance companies and pharmacists turning them in for >> > malpractice to state medical boards simply because they are using the >> > only known treatment that works on Lyme Disease, antibiotics. >> > >> > My opinion is that they will find that antibiotics are the cure for >> > Lyme, but it will most probably be a class of antibiotic that has >> > not even been discovered to date. I had so many wonderful >> > changes in symptoms that had not changed throughout most of >> > my adult life when I was finally allowed to receive antibiotic >> > infusions. >> > >> > But, they were not long enough and I can't get approved again >> > and have already re-mortgaged my home, so there are no funds for >> > more antibiotic infusions that showed me that my life could be so much >> > more and gave me hope again! All the symptoms have not yet >> > reverted back to pre infusion status, but they are changing. That's >> > what's so crazy, I responded exceptionally well to the infusions after >> > using orals and combos first to lessen the bacterial load in my body. >> > But it doesn't matter because some unnamed doctor a Yale reviewed >> > my medical records and stated that treatment for the late stage Lyme >> > Disease with neurological involvement, was " not a medical necessity " , >> > and that's the end of the story. Regardless of how my own doctor's >> > opinion, and the second opinion, plus an 8 " thick file and 20 year >> > history plus Western Blot confirmation all show I've suffered so many >> > years and NOTHING else has ever caused betterment except the >> > antibiotic treatments for Lyme Disease. I was seronegative on ELISA >> > which we all know means nothing. >> > >> > >> > Doctors do not want to risk careers, tenure, homes, and they ability >> > to earn a living, and who can blame them! We must continue our >> > efforts in an accepted or unaccepted manner to get the truth out, in >> > order to protect the few physician's who are compassionate and >> > putting all on the line to treat people like us with Lyme Disease >> > because no one else will bother to help us with the suffering and >> > pain, both physical and emotional. We have to help get the truth >> > out in order to help protect our physicians and in order to help >> > ourselves. Maybe not something most of us can do daily, but when >> > we have those better days from time to time, we can use those days >> > to help promote Lyme Disease awareness. >> > >> > Over 50% of the new cases of Lyme Disease reported each year >> > involve children, our most precious natural resource. And, as >> > we all know, the reported cases are just a tip of the actual >> > number of new cases because of the narrow guidelines put out >> > by the CDC and because people just do not know about Lyme >> > Disease, as there is very little awareness across the United States >> > except within the Lyme community. I believe we have two major >> > needs, to get the outdated CDC criteria changed through public >> > outcry, but to do that we have to first make people aware that >> > Lyme Disease is the fastest growing infectious disease that it >> > is surpassing AIDS in the number of new cases each year. That >> > means we must make " Lyme Awareness Now " a fact, not just something >> > I put on my e-mails. We should all use some kind of organization >> > name on our e-mails indicating the importance of Lyme Awareness Now! >> > It's a beginning and we have to start somewhere. >> > >> > Wishing us all health and freedom from pain, >> > both physical and emotional - >> > >> > >> > C.Tab. wrote: >> > >> > > From: " C.Tab. " <tab@...> >> > > >> > > >Anyone ready to take a stand to STOP STEERE? >> > > > >> > > >> > > Hi, >> > > >> > > Is there anything that we at out computers can do in addition to >> suggesting >> > > questions? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1999 Report Share Posted October 25, 1999 , Why not publish it as a letter to the Editor. I think if you make it clear that this is just your opinion based on all the research you have done, and maybe site articles that support those opinions (which we can all help with), no reason you could be sued. You don't have to use your name or anything, just sign it (a concerned Lymie, or something like that) and maybe entitle it, or state that you are writing it to educate the public. Good luck I have millions of sites bookmarked, but I'll try to send you the good ones. I think the ones that show other treatments and research are best, like the one about " The dirty truth about Lyme " and the Bacteria Revolution " ., with Dr. new culture research. If you don't already have those, let me know and I " ll forward them. Vicki Re: [ ] STOP STEERE >> >> >From: <swsftwtx@...> >> > >> >My opinion on Steere is that he does have Lyme >> >and it affects his brain, causing him to be a >> >megalomaniac. If Steere didn't or doesn't think of >> >something, then of course it cannot possibly be true. >> >Think about it. Even in The Widening Circle, the >> >author relates how the military physician told Steere >> >he had good results using antibiotics with the military >> >personnel who had Lyme. Steere dismisses the whole >> >thing stating something to the effect that " he has tried >> >antibiotics, and they didn't work " , of course we know >> >he probably used for 10-14 days and who knows what >> >antibiotic he tried! I would love to find out who the >> >military physician was who used abx and found them >> >to be working to make the military personnel well, when >> >Lyme caught at onset. And, I'd love to find out if he >> >does treat Lyme in private practice now, assuming >> >he was not career military. He may have been career >> >and this is moot, but I sure would like to get his take on >> >Steere during the beginning of the investigation of the >> >mysterious illness re-named Lyme Disease due to the >> >community of Old Lyme CT having so many people sick >> >with the disease. >> > >> >All these years, Steere has steadfastly refused to accept >> >the scientific evidence published and available to read >> >and only accepts his own " ideas " and worn out mantra, >> >of over diagnosed and over treated. For a supposedly >> >intelligent man to ignore scientific evidence and repeat >> >his own mantra that does not have scientific basis, is >> >simply stupid and causing great harm to so many people. >> >I know some large portion of physicians are egocentric >> >but this takes the cake. >> > >> >I understand he has a forceful personality and speaks well >> >and there have been people like him throughout time who >> >have persuaded others to folly, even to causing great harm >> >to others. As we know, many but not all physician's do not >> >like changes, and it's always easier to maintain the status quo >> >than to go against the " old way of thinking and doing " things. >> > >> >This is an " opinion " not a fact regarding Steere's mental >> >debility. Yet, even greed and avarice do not fully explain >> >how he can blatantly lie year after year in the face of a >> >growing body of scientific evidence. That he's been given >> >the gold medal, and now this undeserved honor from the >> >NIH only speaks of how uninformed and uncaring the >> >entities are that awarded him these visible honors. In >> >my humble opinion, both Polly Murray and the other woman >> >who brought the number of juvenile arthritis cases given the >> >small population to the health department's attention are the >> >ones who deserve the accolades. Steere was simply doing >> >what he was supposed to be doing, and without Polly, I >> >doubt he would have even found out as much as he did about >> >LD, because he's so close minded and egocentric. >> > >> >No offense to any of the people on this list, but I am also >> >willing to bet that Steere is also on the short side, and may >> >suffer from this aspect who are shorter than average which >> >translates in to them being petty tyrants or unwilling to accept >> >information that they don't originate among other personality >> >traits. I just know that big bucks are involved and too >> >many people are making money from our suffering and pain. >> >It seems to me that the subject of a post I made recently >> >regarding Necessary Shift? is a way to dump Steere and his >> >over diagnosed and over treated mantra. Not that the good >> >doctors treating Lyme are abandoning us, far from it, but that >> >they are seeking ways to circumvent Steere and his clique of >> >non thinking scoyphants who continue to support and repeat >> >this worn out mantra of Steere's. >> > >> >After all, wasn't it reported that SKB dumped the Yale clinic >> >finally after not wanting to be associated with the clinic due to >> >the personnel's harsh treatment of Lyme patients, when reviewing >> >medical records and or treating them as their own patients. Yale >> >like the Mayo has a reputation that once meant something, but >> >corporate sponsorship of colleges has taken that integrity away. >> > >> >In the past year or so, the Mayo was publishing at their web site >> >that " opiates " (they probably used narcotics) should never be used >> >to treat intractable chronic pain. Some of us connected with a >> >chronic pain group sent e-mails stating that this was outdated and >> >incorrect information that due to the Mayo's stature world wide, >> >their misinformation on treatment of pain was preventing hundreds >> >of thousands of people world wide from receiving adequate pain >> >relief for intractable chronic pain because of the weight physician's >> >give to information coming from the Mayo. The Mayo and other >> >entities with this icon status MUST be truthful in what they publish >> >as they can cause great harm by merely having a web site that does >> >publish outdated incorrect information. If the people at these >> >bastions of credibility don't know the " truth " then they should be >> >willing to publish both sides of a controversy in medicine and held >> >accountable if they don't. I've read of so many people who went >> >to the Mayo for help with their pain because of the Mayo's icon >> >status and reputation only to be told to lean to live with the pain. >> >This is not acceptable treatment in this day and age. The same is >> >true for Lyme patients seeking help from the Mayo, as I understand >> >it the Mayo does not treat Lyme patients period. Someone please >> >correct me if this is not correct. >> > >> >Supporting documentation was sent along with the e-mails and >> >then sent snail mail, and the Mayo did indeed change the information >> >published at their web site. Maybe they were going to do it anyway, >> >I don't know, but these entities, larger than life, do indeed have a >> >moral responsibility to publish correct information even if they do >> >not agree with it per se. >> > >> >I believe in the power of the pen, too many times it's been proven >> >to me that it does work. Especially in this day and age when taking >> >pen in hand is not the norm anymore and form letters are accepted. >> >To take the time to write an opinion and support that opinion with >> >facts, I believe is a powerful statement. If we all do it, then it's an >> >even more powerful statement. We absolutely must not let web >> >sites get away with printing Steere's mantra, pointing out that it is >> >NOT based on scientific findings but personal opinion. We should >> >encourage the people writing medical columns at papers to read two >> >books at least, Coping With Lyme Disease-Second Edition, >> >Lang, and The Widening Circle, Polly Murray. I bought these two >> >books and gave them to my pain management physician who was >> >having a great deal of difficulty wrapping his mind around Lyme Disease >> >and the fact that it must be treated with higher dose and longer periods >> >of antibiotics. The pain doctor I had before him at the same clinic >> >understood the Lyme Disease dilemma, but we had a conflict so I >> >opted to see the physician I see now who didn't know much about >> >Lyme except what Steere had repeated ad nauseum. >> > >> >It seems to me that people do not stop to think about the fact that >> >the Baby Boomers and all who came after them have been fed a >> >steady diet of antibiotics in the cattle, swine, and poultry we have >> >utilized for food sources most of our lives. It only makes common >> >sense that should we get an especially difficult bacterial infection >> >that it would take more and longer doses of treatment to kill the >> >bacteria especially if it's been undiagnosed and untreated for many >> >years. I simply do not understand what is so difficult for the over >> >diagnosed and over treated bunch of idiots to understand about this >> >fact. >> > >> >I do believe that the money poured into the pockets of the naysayers >> >by insurance companies has more to do with the more accepted >> >minimal treatment of Lyme Disease than any other single factor. The >> >insurance companies (not all of them but far too many) just want to >> >increase their profits, and until HMO's became fact, it was much >> >easier to be treated for Lyme Disease, providing you had a Lyme >> >literate physician. Now, not only do the doctors have to be >> >concerned about their peers, they also have to be concerned about >> >the insurance companies and pharmacists turning them in for >> >malpractice to state medical boards simply because they are using the >> >only known treatment that works on Lyme Disease, antibiotics. >> > >> >My opinion is that they will find that antibiotics are the cure for >> >Lyme, but it will most probably be a class of antibiotic that has >> >not even been discovered to date. I had so many wonderful >> >changes in symptoms that had not changed throughout most of >> >my adult life when I was finally allowed to receive antibiotic >> >infusions. >> > >> >But, they were not long enough and I can't get approved again >> >and have already re-mortgaged my home, so there are no funds for >> >more antibiotic infusions that showed me that my life could be so much >> >more and gave me hope again! All the symptoms have not yet >> >reverted back to pre infusion status, but they are changing. That's >> >what's so crazy, I responded exceptionally well to the infusions after >> >using orals and combos first to lessen the bacterial load in my body. >> >But it doesn't matter because some unnamed doctor a Yale reviewed >> >my medical records and stated that treatment for the late stage Lyme >> >Disease with neurological involvement, was " not a medical necessity " , >> >and that's the end of the story. Regardless of how my own doctor's >> >opinion, and the second opinion, plus an 8 " thick file and 20 year >> >history plus Western Blot confirmation all show I've suffered so many >> >years and NOTHING else has ever caused betterment except the >> >antibiotic treatments for Lyme Disease. I was seronegative on ELISA >> >which we all know means nothing. >> > >> > >> >Doctors do not want to risk careers, tenure, homes, and they ability >> >to earn a living, and who can blame them! We must continue our >> >efforts in an accepted or unaccepted manner to get the truth out, in >> >order to protect the few physician's who are compassionate and >> >putting all on the line to treat people like us with Lyme Disease >> >because no one else will bother to help us with the suffering and >> >pain, both physical and emotional. We have to help get the truth >> >out in order to help protect our physicians and in order to help >> >ourselves. Maybe not something most of us can do daily, but when >> >we have those better days from time to time, we can use those days >> >to help promote Lyme Disease awareness. >> > >> >Over 50% of the new cases of Lyme Disease reported each year >> >involve children, our most precious natural resource. And, as >> >we all know, the reported cases are just a tip of the actual >> >number of new cases because of the narrow guidelines put out >> >by the CDC and because people just do not know about Lyme >> >Disease, as there is very little awareness across the United States >> >except within the Lyme community. I believe we have two major >> >needs, to get the outdated CDC criteria changed through public >> >outcry, but to do that we have to first make people aware that >> >Lyme Disease is the fastest growing infectious disease that it >> >is surpassing AIDS in the number of new cases each year. That >> >means we must make " Lyme Awareness Now " a fact, not just something >> >I put on my e-mails. We should all use some kind of organization >> >name on our e-mails indicating the importance of Lyme Awareness Now! >> >It's a beginning and we have to start somewhere. >> > >> >Wishing us all health and freedom from pain, >> >both physical and emotional - >> > >> > >> >C.Tab. wrote: >> > >> >> From: " C.Tab. " <tab@...> >> >> >> >> >Anyone ready to take a stand to STOP STEERE? >> >> > >> >> >> >> Hi, >> >> >> >> Is there anything that we at out computers can do in addition to >> suggesting >> >> questions? >> > >> >>Send to -Offtopiconelist messages unrelated to lyme, please. >> >/archive/lyme-aid >> >/archives.cgi/Lyme-Documents >> >To unsubscribe, send email to -unsubscribeonelist >> >You may substitute " subscribe " , or " digest " or " normal " for >> >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank >> both the message and subject header. >> > >> >> > Send to -Offtopiconelist messages unrelated to lyme, please. >> /archive/lyme-aid >> /archives.cgi/Lyme-Documents >> To unsubscribe, send email to -unsubscribeonelist >> You may substitute " subscribe " , or " digest " or " normal " for >> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > >>Send to -Offtopiconelist messages unrelated to lyme, please. >/archive/lyme-aid >/archives.cgi/Lyme-Documents >To unsubscribe, send email to -unsubscribeonelist >You may substitute " subscribe " , or " digest " or " normal " for >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1999 Report Share Posted October 25, 1999 Has anyone thought about writing to Ann Landers en masse to see if she'll pick up on this? She has a huge readership. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1999 Report Share Posted October 25, 1999 I like the idea and I would be happy to be the one to consolidate and put the whole thing together, sending it to the list first for approval. Please let me know if I can be of service this way. (Michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 1999 Report Share Posted October 25, 1999 Wonderful idea, but it should come from someone other than me, I write like I talk, too fast, too much and I have a hard time getting to the point. But maybe, one person can write the main letter, then the rest of us could write our own stories and they could all be sent in one package to Ann. Wouldn't that make a statement? What do you think? Re: [ ] STOP STEERE >From: lisa86@... > >Has anyone thought about writing to Ann Landers en masse to see if she'll >pick up on this? She has a huge readership. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1999 Report Share Posted October 26, 1999 , I vote for you, that would be great. Now lets hear from everyone else. I don't think we'll have any objections. Thanks for offering. Its a big job. But I for one, would chip in for the postage. Re: [Lyme-aid] STOP STEERE >From: lisa86@... > >I like the idea and I would be happy to be the one to consolidate and put the >whole thing together, sending it to the list first for approval. Please let >me know if I can be of service this way. > > (Michigan) > >>Send to -Offtopiconelist messages unrelated to lyme, please. >/archive/lyme-aid >/archives.cgi/Lyme-Documents >To unsubscribe, send email to -unsubscribeonelist >You may substitute " subscribe " , or " digest " or " normal " for >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1999 Report Share Posted October 26, 1999 In a message dated 10/26/1999 2:17:37 AM Eastern Daylight Time, ferraroa@... writes: > , I vote for you, that would be great. Now lets hear from everyone else. > I don't think we'll have any objections. Thanks for offering. Its a big job. > But I for one, would chip in for the postage. Me too! Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1999 Report Share Posted October 26, 1999 Start sending me what you want Ann Landers and Abby to hear from us. I will compose a cover letter and draw excerpts from each of yours to try to get their attention and responses from the readers. I will probably include the Lyme-aid list address, so we may be bombarded with new people. Get ready. Use " reply " so it will pick up this subject line and I will know at a glance which ones I need to get to fast. Thanks. (Michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1999 Report Share Posted October 26, 1999 I think this is a great idea! A letter published regarding the under treatment of chronic pain was sent to same place and it resulted in a plethora of responses from the readers about the subject. The original article sent in was sent by pain mgmt physician in protest of the way cp patients are treated like addicts etc. - lisa86@... wrote: > From: lisa86@... > > Has anyone thought about writing to Ann Landers en masse to see if she'll > pick up on this? She has a huge readership. > > > Send to -Offtopiconelist messages unrelated to lyme, please. > /archive/lyme-aid > /archives.cgi/Lyme-Documents > To unsubscribe, send email to -unsubscribeonelist > You may substitute " subscribe " , or " digest " or " normal " for > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. Quote Link to comment Share on other sites More sharing options...
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