Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 a, I do not have typical CFS because: 1) I am remarkably free from allergy, infection and chemical sensitivity. 2) My natural killer cell number and function were not impaired when tested. 3) My exhaustion has been centered primarily in my chest, not my muscles or brain as reported by most CFS patients. Until 2005, I experienced no significant cognitive impairment, nor muscle pain, nor joint pain, nor fever, nor sore throat. 4) During most of my illness, exercise was almost as likely to be helpful as harmful to me. Exercise was most likely to be beneficial when the muscles involved had not been exercised for at least one month. 5) My prominent symptom of dyspnea does not usually occur in CFS. 6) The onset of my illness was gradual, neither sudden nor obviously infectious. 7) My exhaustion is constant, not relapsing and remitting. 8) My cortisol level falls with exercise but responds normally under mental or emotional stress. Tim, I probably should know, but what is not typical of your cfs?Thanks,a Carnes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 Tim, what happened, ie what new symptoms happened, in 1995? a > > a, > > I do not have typical CFS because: > > 1) I am remarkably free from allergy, infection and chemical sensitivity. > 2) My natural killer cell number and function were not impaired when > tested. > 3) My exhaustion has been centered primarily in my chest, not my muscles > or brain as reported by most CFS patients. Until 2005, I experienced no > significant cognitive impairment, nor muscle pain, nor joint pain, nor > fever, nor sore throat. > 4) During most of my illness, exercise was almost as likely to be helpful > as harmful to me. Exercise was most likely to be beneficial when the > muscles involved had not been exercised for at least one month. > 5) My prominent symptom of dyspnea does not usually occur in CFS. > 6) The onset of my illness was gradual, neither sudden nor obviously > infectious. > 7) My exhaustion is constant, not relapsing and remitting. > 8) My cortisol level falls with exercise but responds normally under > mental or emotional stress. > > Tim, I probably should know, but what is not typical of your cfs? > > Thanks, > a Carnes > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 a, I assume you mean 2005. That was when I first felt truly cognitively impaired, and when I developed synovitis in my right hip. Tim Tim, what happened, ie what new symptoms happened, in 1995?a>> a,> > I do not have typical CFS because:> > 1) I am remarkably free from allergy, infection and chemical sensitivity.> 2) My natural killer cell number and function were not impaired when> tested.> 3) My exhaustion has been centered primarily in my chest, not my muscles> or brain as reported by most CFS patients. Until 2005, I experienced no> significant cognitive impairment, nor muscle pain, nor joint pain, nor> fever, nor sore throat.> 4) During most of my illness, exercise was almost as likely to be helpful> as harmful to me. Exercise was most likely to be beneficial when the> muscles involved had not been exercised for at least one month.> 5) My prominent symptom of dyspnea does not usually occur in CFS.> 6) The onset of my illness was gradual, neither sudden nor obviously> infectious.> 7) My exhaustion is constant, not relapsing and remitting.> 8) My cortisol level falls with exercise but responds normally under> mental or emotional stress. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 Hum, yeah, you don't sound like a typical case. Please excuse me for a bad memory, but did they ever find any infections in your case? a > > a, > > I assume you mean 2005. That was when I first felt truly cognitively > impaired, and when I developed synovitis in my right hip. > > Tim > > Tim, what happened, ie what new symptoms happened, in 1995? > > a > > > > > a, > > > > I do not have typical CFS because: > > > > 1) I am remarkably free from allergy, infection and chemical > sensitivity. > > 2) My natural killer cell number and function were not impaired when > > tested. > > 3) My exhaustion has been centered primarily in my chest, not my > muscles > > or brain as reported by most CFS patients. Until 2005, I > experienced no > > significant cognitive impairment, nor muscle pain, nor joint pain, > nor > > fever, nor sore throat. > > 4) During most of my illness, exercise was almost as likely to be > helpful > > as harmful to me. Exercise was most likely to be beneficial when the > > muscles involved had not been exercised for at least one month. > > 5) My prominent symptom of dyspnea does not usually occur in CFS. > > 6) The onset of my illness was gradual, neither sudden nor obviously > > infectious. > > 7) My exhaustion is constant, not relapsing and remitting. > > 8) My cortisol level falls with exercise but responds normally under > > mental or emotional stress. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2007 Report Share Posted January 18, 2007 No, dozens of infection tests have been run, but they were all negative. Cheney found the most striking abnormality: Cardiac output 6 standard deviations below the mean, which is worse than the average hospitalized patient waiting for transplant. Tim Hum, yeah, you don't sound like a typical case. Please excuse me for a bad memory, but did they ever find any infections in your case?a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2007 Report Share Posted January 18, 2007 Hi Tim, Well, borrelia attacks heart muscle. If Cheney ordered the tests for borrelia you can safely assume you have not had an accurate test - nothing against him - he just uses the standard labs for a western blot and they only look for one band. Have you been tested at IgeneX for borrelia? How about bartonella or cat scratch fever? If not, I can give you some nice simple directions on how to get tested for borrelia aka Lyme disease. a C. > > No, dozens of infection tests have been run, but they were all negative. > Cheney found the most striking abnormality: Cardiac output 6 standard > deviations below the mean, which is worse than the average hospitalized > patient waiting for transplant. > > Tim > > Hum, yeah, you don't sound like a typical case. Please excuse me for > a bad memory, but did they ever find any infections in your case? > > a > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2007 Report Share Posted January 18, 2007 And inadequate pathogen testing is not limited to borrelia. That's the problem. What they do find they ignore as "normal flora". It makes no sense. Why is it that when all these kids with resistant staph infections on their skin get tested, they don't throw out their test results as "normal flora" like they do most of the time? Because there's an obvious, clearly visible infection that CAN'T be ignored. Since our infections are hidden, they CAN be ignored. A pwc could grow a petri dish full of abx resistant staph and those results would be tossed by the lab as "contamination" rather than explored as a possible pathogen. It's pretty sickening. Literally. If we think the pwc community is large now, just wait 'til all these kids who are rapidly acquiring resistant staph infections are all grown up carrying the same bugs, just hidden better. penny pjeanneus <pj7@...> wrote: Hi Tim,Well, borrelia attacks heart muscle. If Cheney ordered the tests for borrelia you can safely assume you have not had an accurate test - nothing against him - he just uses the standard labs for a western blot and they only look for one band. Have you been tested at IgeneX for borrelia? How about bartonella or cat scratch fever?If not, I can give you some nice simple directions on how to get tested for borrelia aka Lyme disease.a C.>> No, dozens of infection tests have been run, but they were all negative.> Cheney found the most striking abnormality: Cardiac output 6 standard> deviations below the mean, which is worse than the average hospitalized> patient waiting for transplant.> > Tim> > Hum, yeah, you don't sound like a typical case. Please excuse me for > a bad memory, but did they ever find any infections in your case?> > a> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 a, I had the IgeneX Lyme test when I was in Reno a few years ago, and Dr. Jemsek ordered a range of coinfection tests last year. Tim Hi Tim,Well, borrelia attacks heart muscle. If Cheney ordered the tests for borrelia you can safely assume you have not had an accurate test - nothing against him - he just uses the standard labs for a western blot and they only look for one band. Have you been tested at IgeneX for borrelia? How about bartonella or cat scratch fever?If not, I can give you some nice simple directions on how to get tested for borrelia aka Lyme disease.a C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 Tim Try find if you have pseudonomas - staph areus-VRE and a few other oppurtunists/disease causing organisms..I'm pretty sure Penny has the trifecta of these organisms. tony --- In infections , candtcampbell@... wrote: > > a, > > I had the IgeneX Lyme test when I was in Reno a few years ago, and Dr. > Jemsek ordered a range of coinfection tests last year. > > Tim > > Hi Tim, > > Well, borrelia attacks heart muscle. If Cheney ordered the tests for > borrelia you can safely assume you have not had an accurate test - > nothing against him - he just uses the standard labs for a western > blot and they only look for one band. > > Have you been tested at IgeneX for borrelia? How about bartonella or > cat scratch fever? > > If not, I can give you some nice simple directions on how to get > tested for borrelia aka Lyme disease. > > a C. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 Hi Tim, Sorry to keep buggin' ya, but do you have your IgeneX results? I assume you are referring to IgG and IgM western blots on blood, right? I finally got a good list of how to interpret them and would be most interested to see how you fit the list. Of course, do not send or post this if you don't wish to. (Also, I would not presume to know more than Jemsek - if he said you were not positive I would figure he is right.) Best, a > > a, > > I had the IgeneX Lyme test when I was in Reno a few years ago, and Dr. > Jemsek ordered a range of coinfection tests last year. > > Tim > > Hi Tim, > > Well, borrelia attacks heart muscle. If Cheney ordered the tests for > borrelia you can safely assume you have not had an accurate test - > nothing against him - he just uses the standard labs for a western > blot and they only look for one band. > > Have you been tested at IgeneX for borrelia? How about bartonella or > cat scratch fever? > > If not, I can give you some nice simple directions on how to get > tested for borrelia aka Lyme disease. > > a C. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 Tony, What difference does it make to me if Penny has these bugs? (Not that I don't care about Penny's suffering, but...) a, You assume correctly, and I don't mind sharing my IgeneX results or any others for that matter. On the IgM, all bands were negative except for 41 kDa which was +/- and 45 kDa which was +. On the IgG, 18, 22, 28, 37, 73, 83 and 93 kDa were negative, and the remaining bands were as follows: 23-25 kDa +/- 30 kDa +/- 31 kDa +/- 34 kDa +/- 39 kDa +/- 41 kDa +++ 45 kDa + 58 kDa + 66 kDa +/- Tim Try find if you have pseudonomas - staph areus-VRE and a few other oppurtunists/disease causing organisms..I'm pretty sure Penny has the trifecta of these organisms.tony Hi Tim,Sorry to keep buggin' ya, but do you have your IgeneX results? I assume you are referring to IgG and IgM western blots on blood, right?I finally got a good list of how to interpret them and would be most interested to see how you fit the list. Of course, do not send or post this if you don't wish to. (Also, I would not presume to know more than Jemsek - if he said you were not positive I would figure he is right.)Best,a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 I think Tony's point is, and I agree, that these bugs are causing mayhem in us, and almost no one's paying any attention, doctors aren't testing for them and/or are ignoring them and labs throw them out as "contamination" and "normal flora" when they show up. So the cause of illness could be right under their noses and they will discount it. Truth is, there's an abundance of documentation that these bugs are extremely destructive and treatment resistant, but the medical "authorities" keep trying to tell us that such conditions occur only rarely, and only a few will stand up and acknowledge what's really going on. But the response from the public is always the same. Why should I care? Why should I pay attention? The public's buying into the propaganda whether they know it or not and they are constantly having their attention diverted to side issues. It's frustrating as hell. If only people would start studying real chronic infections and the organisms that cause them, like has with osteomyeltis, we might start getting somewhere. penny candtcampbell@... wrote: Tony, What difference does it make to me if Penny has these bugs? (Not that I don't care about Penny's suffering, but...) a, You assume correctly, and I don't mind sharing my IgeneX results or any others for that matter. On the IgM, all bands were negative except for 41 kDa which was +/- and 45 kDa which was +. On the IgG, 18, 22, 28, 37, 73, 83 and 93 kDa were negative, and the remaining bands were as follows: 23-25 kDa +/- 30 kDa +/- 31 kDa +/- 34 kDa +/- 39 kDa +/- 41 kDa +++ 45 kDa + 58 kDa + 66 kDa +/- Tim Try find if you have pseudonomas - staph areus-VRE and a few other oppurtunists/disease causing organisms..I'm pretty sure Penny has the trifecta of these organisms.tony Hi Tim,Sorry to keep buggin' ya, but do you have your IgeneX results? I assume you are referring to IgG and IgM western blots on blood, right?I finally got a good list of how to interpret them and would be most interested to see how you fit the list. Of course, do not send or post this if you don't wish to. (Also, I would not presume to know more than Jemsek - if he said you were not positive I would figure he is right.)Best,a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 Tim''It's like a grand slam of bad bugs. They actually pass out info sheets to nurses to warn them about the inherent dangers of these organisms- But when you turn up at hospital and wear the cfs badge, all this information goes out the window.It's like what happens on the second floor of the hospital is completely unknown to anyone a floor above or below this level....What Penny has in the way of oppurtunistic infections is what many also have growing in the way of oppurtunistic infections.So to say you are completely clear of INFECTION with out this knowledge is CRAP !!!!!!!!!!!!!!!!! Does this make sense ..OR... In other words, if you are laden with fuel and a fire breaks out, don't be surprised if you go up in flames. --- In infections , candtcampbell@... wrote: > > Tony, > > What difference does it make to me if Penny has these bugs? (Not that I > don't care about Penny's suffering, but...) > > a, > > You assume correctly, and I don't mind sharing my IgeneX results or any > others for that matter. On the IgM, all bands were negative except for 41 > kDa which was +/- and 45 kDa which was +. On the IgG, 18, 22, 28, 37, 73, > 83 and 93 kDa were negative, and the remaining bands were as follows: > > 23-25 kDa +/- > 30 kDa +/- > 31 kDa +/- > 34 kDa +/- > 39 kDa +/- > 41 kDa +++ > 45 kDa + > 58 kDa + > 66 kDa +/- > > Tim > > Try find if you have pseudonomas - staph areus-VRE and a few other > oppurtunists/disease causing organisms..I'm pretty sure Penny has the > trifecta of these organisms. > tony > > Hi Tim, > Sorry to keep buggin' ya, but do you have your IgeneX results? I > assume you are referring to IgG and IgM western blots on blood, right? > > I finally got a good list of how to interpret them and would be most > interested to see how you fit the list. Of course, do not send or > post this if you don't wish to. (Also, I would not presume to know > more than Jemsek - if he said you were not positive I would figure he > is right.) > > Best, > a > Quote Link to comment Share on other sites More sharing options...
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