Guest guest Posted August 5, 2006 Report Share Posted August 5, 2006 [] Re: RnaseL<snip>> Well, the people who devised the RnaseL (Shadolnik, Lebleu etc.)didn't say> anything about bacterial infections they only mentioned viruses in> connection with RnaseL.>> NellyHere is an excerpt from a Cheney tape in which he says that RNase-Ldysfunction has many causes:"Some insult ultimately leads to cell dysfunction, usuallythrough RNase-L activity. "Now RNase-L can also, as an intracellular defense mechanism,be triggered by intracellular bacterial infections, not justviruses. For example, mycoplasma infections and/or chlamydiainfections." Q: So you would not call that the basis of CFS - there arepeople out there who say, "The reason you have CFS is because of amycoplasma." Dr. C: "It could trigger it, but isn't necessarily thecause of all cases. What seems to be the common denominator is RNase-L defense mechanisms go up against certain types of intracellularpathogens that can hit - including viruses, mycoplasmas, chlamydias,etc. "And because of that, the nature of this viral infection canbe quite variable. Because it doesn't have to be ONLY one kind ofvirus. It doesn't even have to be a virus. It could be a bacterialinfection. IT COULD BE A CHLAMYDIAL PNEUMONIA INFECTION OF THESINUSES - THAT COULD TRIGGER IT. Or mycoplasma infection of thesinuses could trigger it." Q: "So it might not even be a viral-induced RNase-L." Dr. C: "No. No. It could be viral or other intracellularmicro-organism-induced RNase-L. RNase-L IS THE KEY. "RNase-L defends you from intracellular invasion.Mycoplasmas are intracellular invaders, therefore this [RNase-lActivity] is your defense. Viruses -including adenoviruses - areintracellular invaders, therefore this [RNase-L Activity] is yourdefense. Chlamydia pneumoniae is an intracellular invader and yourdefense is RNase-L. Whatever can invade the cell, this [RNase-LActivity] is your primary defense."So it could be ANY of those triggers - which is why thedisease can look different in the beginning. But, everybody mergestoward this problem [Phase II]. And what characterizes Phase II is:my brain is going; my energy is going; and I hurt - although 10%don't have much pain.This list is intended for patients to share personal experiences with eachother, not to give medical advice. If you are interested in any treatmentdiscussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2006 Report Share Posted August 5, 2006 Nelly Very interesting posts, your last few.This really makes the internet and forum sites very valuable, I personally hate all cfs docs and think they are expensive imbeciles, you have a strong history of why this is so.I did feel that maybe credit was due to the fact that he may have pointed out some severe damage occuring to sufferers, as opposed to the nothingness everyone else offers.But if something has been around for yonks and bnever been bought by medicine, this guys wimpers should by shot down. > <snip> > > Well, the people who devised the RnaseL (Shadolnik, Lebleu etc.) > didn't say > > anything about bacterial infections they only mentioned viruses in > > connection with RnaseL. > > > > Nelly > > Here is an excerpt from a Cheney tape in which he says that RNase-L > dysfunction has many causes: > " Some insult ultimately leads to cell dysfunction, usually > through RNase-L activity. > " Now RNase-L can also, as an intracellular defense mechanism, > be triggered by intracellular bacterial infections, not just > viruses. For example, mycoplasma infections and/or chlamydia > infections. " > Q: So you would not call that the basis of CFS - there are > people out there who say, " The reason you have CFS is because of a > mycoplasma. " > Dr. C: " It could trigger it, but isn't necessarily the > cause of all cases. What seems to be the common denominator is RNase- > L defense mechanisms go up against certain types of intracellular > pathogens that can hit - including viruses, mycoplasmas, chlamydias, > etc. > " And because of that, the nature of this viral infection can > be quite variable. Because it doesn't have to be ONLY one kind of > virus. It doesn't even have to be a virus. It could be a bacterial > infection. IT COULD BE A CHLAMYDIAL PNEUMONIA INFECTION OF THE > SINUSES - THAT COULD TRIGGER IT. Or mycoplasma infection of the > sinuses could trigger it. " > Q: " So it might not even be a viral-induced RNase-L. " > Dr. C: " No. No. It could be viral or other intracellular > micro-organism-induced RNase-L. RNase-L IS THE KEY. > " RNase-L defends you from intracellular invasion. > Mycoplasmas are intracellular invaders, therefore this [RNase-l > Activity] is your defense. Viruses -including adenoviruses - are > intracellular invaders, therefore this [RNase-L Activity] is your > defense. Chlamydia pneumoniae is an intracellular invader and your > defense is RNase-L. Whatever can invade the cell, this [RNase-L > Activity] is your primary defense. > " So it could be ANY of those triggers - which is why the > disease can look different in the beginning. But, everybody merges > toward this problem [Phase II]. And what characterizes Phase II is: > my brain is going; my energy is going; and I hurt - although 10% > don't have much pain. > > > > This list is intended for patients to share personal experiences with each > other, not to give medical advice. If you are interested in any treatment > discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2006 Report Share Posted August 5, 2006 Sorry if this post is a repeat, it just won't go through so I am resending it, I sent it with the others over an hour ago but it won't go through. It's part of a conversation I had with a couple of DeMeirleir's devotees a few years ago Tony, you might realise that my beef with you is merely that you just don't understand that you are not alone in thinking that bacterial infections are a major, MAJOR factor in our illnesses, the only factor maybe or at least one that would amply suffice to explain how bad we feel. I just think identifying them is more complex than what you make out (and of course I agree that labs and docs could acheive HEAPS more by just trying) I don't for one second think you are wrong to try and ID as much as possible, just that you are a pain in the a... to a) dismiss other bugs that you are not familiar with to rant and rave as if we all disagreed with you c) as if we think the Cheneys and DeMeirleir and all the CFS gurus were gods. I don't think many of us here think this Nelly [infections] Fw: [] Re: RnaseL NellyVery interesting posts, your last few.This really makes the internet and forum sites very valuable, I personally hate all cfs docs and think they are expensive imbeciles, you have a strong history of why this is so.I did feel that maybe credit was due to the fact that he may have pointed out some severe damage occuring to sufferers, as opposed to the nothingness everyone else offers.But if something has been around for yonks and bnever been bought by medicine, this guys wimpers should by shot down.> <snip>> > Well, the people who devised the RnaseL (Shadolnik, Lebleu etc.)> didn't say> > anything about bacterial infections they only mentioned viruses in> > connection with RnaseL.> >> > Nelly> > Here is an excerpt from a Cheney tape in which he says that RNase-L> dysfunction has many causes:> "Some insult ultimately leads to cell dysfunction, usually> through RNase-L activity.> "Now RNase-L can also, as an intracellular defense mechanism,> be triggered by intracellular bacterial infections, not just> viruses. For example, mycoplasma infections and/or chlamydia> infections."> Q: So you would not call that the basis of CFS - there are> people out there who say, "The reason you have CFS is because of a> mycoplasma."> Dr. C: "It could trigger it, but isn't necessarily the> cause of all cases. What seems to be the common denominator is RNase-> L defense mechanisms go up against certain types of intracellular> pathogens that can hit - including viruses, mycoplasmas, chlamydias,> etc.> "And because of that, the nature of this viral infection can> be quite variable. Because it doesn't have to be ONLY one kind of> virus. It doesn't even have to be a virus. It could be a bacterial> infection. IT COULD BE A CHLAMYDIAL PNEUMONIA INFECTION OF THE> SINUSES - THAT COULD TRIGGER IT. Or mycoplasma infection of the> sinuses could trigger it."> Q: "So it might not even be a viral-induced RNase-L."> Dr. C: "No. No. It could be viral or other intracellular> micro-organism-induced RNase-L. RNase-L IS THE KEY.> "RNase-L defends you from intracellular invasion.> Mycoplasmas are intracellular invaders, therefore this [RNase-l> Activity] is your defense. Viruses -including adenoviruses - are> intracellular invaders, therefore this [RNase-L Activity] is your> defense. Chlamydia pneumoniae is an intracellular invader and your> defense is RNase-L. Whatever can invade the cell, this [RNase-L> Activity] is your primary defense.> "So it could be ANY of those triggers - which is why the> disease can look different in the beginning. But, everybody merges> toward this problem [Phase II]. And what characterizes Phase II is:> my brain is going; my energy is going; and I hurt - although 10%> don't have much pain.> > > > This list is intended for patients to share personal experiences with each> other, not to give medical advice. If you are interested in any treatment> discussed here, please consult your doctor.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2006 Report Share Posted August 5, 2006 Well, I certainly understand your frustration after those encounters. Can't tell you how many "great" doctors I've seen, who the greatest thing about them were their egos. :-) At least he's made progress in the right direction. Let's just hope it's also humbled him a bit, and that his curiosity is driving him as much as his ego. I wouldn't feel safe in the hands of someone who thinks he knows everything either. While doctors like that can at times be brilliant and really help people, they also can truly be hazardous to our health. penny Nelly Pointis <janel@...> wrote: [] Re: RnaseL<snip>> Well, the people who devised the RnaseL (Shadolnik, Lebleu etc.)didn't say> anything about bacterial infections they only mentioned viruses in> connection with RnaseL.>> NellyHere is an excerpt from a Cheney tape in which he says that RNase-Ldysfunction has many causes:"Some insult ultimately leads to cell dysfunction, usuallythrough RNase-L activity. "Now RNase-L can also, as an intracellular defense mechanism,be triggered by intracellular bacterial infections, not justviruses. For example, mycoplasma infections and/or chlamydiainfections." Q: So you would not call that the basis of CFS - there arepeople out there who say, "The reason you have CFS is because of amycoplasma." Dr. C: "It could trigger it, but isn't necessarily thecause of all cases. What seems to be the common denominator is RNase-L defense mechanisms go up against certain types of intracellularpathogens that can hit - including viruses, mycoplasmas, chlamydias,etc. "And because of that, the nature of this viral infection canbe quite variable. Because it doesn't have to be ONLY one kind ofvirus. It doesn't even have to be a virus. It could be a bacterialinfection. IT COULD BE A CHLAMYDIAL PNEUMONIA INFECTION OF THESINUSES - THAT COULD TRIGGER IT. Or mycoplasma infection of thesinuses could trigger it." Q: "So it might not even be a viral-induced RNase-L." Dr. C: "No. No. It could be viral or other intracellularmicro-organism-induced RNase-L. RNase-L IS THE KEY. "RNase-L defends you from intracellular invasion.Mycoplasmas are intracellular invaders, therefore this [RNase-lActivity] is your defense. Viruses -including adenoviruses - areintracellular invaders, therefore this [RNase-L Activity] is yourdefense. Chlamydia pneumoniae is an intracellular invader and yourdefense is RNase-L. Whatever can invade the cell, this [RNase-LActivity] is your primary defense."So it could be ANY of those triggers - which is why thedisease can look different in the beginning. But, everybody mergestoward this problem [Phase II]. And what characterizes Phase II is:my brain is going; my energy is going; and I hurt - although 10%don't have much pain.This list is intended for patients to share personal experiences with eachother, not to give medical advice. If you are interested in any treatmentdiscussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2006 Report Share Posted August 5, 2006 - Dear group, I called and tried to get a referral from Dr. Cheney's office, as, I course, cannot afford (no health insurance) to see him..and it would take a year to get an appointment..but they will not refer anyone (unless you are a patient) to anyone, period... Well, I have had much more overt cardiac symptomalogy, which is the main motivating factor for me. Does anyone, know why they will not give referrals? has he been sued, or what? Amelia -- In infections , Penny Houle <pennyhoule@...> wrote: > > Well, I certainly understand your frustration after those encounters. > > Can't tell you how many " great " doctors I've seen, who the greatest thing about them were their egos. :-) > > At least he's made progress in the right direction. Let's just hope it's also humbled him a bit, and that his curiosity is driving him as much as his ego. I wouldn't feel safe in the hands of someone who thinks he knows everything either. While doctors like that can at times be brilliant and really help people, they also can truly be hazardous to our health. > > penny > > Nelly Pointis <janel@...> wrote: > > [] Re: RnaseL > > > > <snip> > > Well, the people who devised the RnaseL (Shadolnik, Lebleu etc.) > didn't say > > anything about bacterial infections they only mentioned viruses in > > connection with RnaseL. > > > > Nelly > > Here is an excerpt from a Cheney tape in which he says that RNase-L > dysfunction has many causes: > " Some insult ultimately leads to cell dysfunction, usually > through RNase-L activity. > " Now RNase-L can also, as an intracellular defense mechanism, > be triggered by intracellular bacterial infections, not just > viruses. For example, mycoplasma infections and/or chlamydia > infections. " > Q: So you would not call that the basis of CFS - there are > people out there who say, " The reason you have CFS is because of a > mycoplasma. " > Dr. C: " It could trigger it, but isn't necessarily the > cause of all cases. What seems to be the common denominator is RNase- > L defense mechanisms go up against certain types of intracellular > pathogens that can hit - including viruses, mycoplasmas, chlamydias, > etc. > " And because of that, the nature of this viral infection can > be quite variable. Because it doesn't have to be ONLY one kind of > virus. It doesn't even have to be a virus. It could be a bacterial > infection. IT COULD BE A CHLAMYDIAL PNEUMONIA INFECTION OF THE > SINUSES - THAT COULD TRIGGER IT. Or mycoplasma infection of the > sinuses could trigger it. " > Q: " So it might not even be a viral-induced RNase-L. " > Dr. C: " No. No. It could be viral or other intracellular > micro-organism-induced RNase-L. RNase-L IS THE KEY. > " RNase-L defends you from intracellular invasion. > Mycoplasmas are intracellular invaders, therefore this [RNase-l > Activity] is your defense. Viruses -including adenoviruses - are > intracellular invaders, therefore this [RNase-L Activity] is your > defense. Chlamydia pneumoniae is an intracellular invader and your > defense is RNase-L. Whatever can invade the cell, this [RNase-L > Activity] is your primary defense. > " So it could be ANY of those triggers - which is why the > disease can look different in the beginning. But, everybody merges > toward this problem [Phase II]. And what characterizes Phase II is: > my brain is going; my energy is going; and I hurt - although 10% > don't have much pain. > > > > This list is intended for patients to share personal experiences with each > other, not to give medical advice. If you are interested in any treatment > discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2006 Report Share Posted August 5, 2006 Amelia Are you after treatment or hot air.I think if you got in to see cheney, all he'll do is blow hot air up your a...s.And that's expenisve hot air.The guy is learning that things are absolutely stuffed cardiovascular wise, yet all he offers is multivitamins and is awaiting his pig cell trial therapies...These are the ones that are going to make the earth spin the other way.The guy is expensive, and in my opinion generally just gets your mood right, as opposed to getting your body right.buyer beware, start learning and more importantly learn to read between the lines of what his patints claim.. Just a thought, a paula that posts here is vbery familiar with his offices and his practises.... tony > > <snip> > > > Well, the people who devised the RnaseL (Shadolnik, Lebleu etc.) > > didn't say > > > anything about bacterial infections they only mentioned viruses in > > > connection with RnaseL. > > > > > > Nelly > > > > Here is an excerpt from a Cheney tape in which he says that RNase- L > > dysfunction has many causes: > > " Some insult ultimately leads to cell dysfunction, usually > > through RNase-L activity. > > " Now RNase-L can also, as an intracellular defense > mechanism, > > be triggered by intracellular bacterial infections, not just > > viruses. For example, mycoplasma infections and/or chlamydia > > infections. " > > Q: So you would not call that the basis of CFS - there are > > people out there who say, " The reason you have CFS is because of a > > mycoplasma. " > > Dr. C: " It could trigger it, but isn't necessarily the > > cause of all cases. What seems to be the common denominator is > RNase- > > L defense mechanisms go up against certain types of intracellular > > pathogens that can hit - including viruses, mycoplasmas, chlamydias, > > etc. > > " And because of that, the nature of this viral infection can > > be quite variable. Because it doesn't have to be ONLY one kind of > > virus. It doesn't even have to be a virus. It could be a bacterial > > infection. IT COULD BE A CHLAMYDIAL PNEUMONIA INFECTION OF THE > > SINUSES - THAT COULD TRIGGER IT. Or mycoplasma infection of the > > sinuses could trigger it. " > > Q: " So it might not even be a viral-induced RNase-L. " > > Dr. C: " No. No. It could be viral or other intracellular > > micro-organism-induced RNase-L. RNase-L IS THE KEY. > > " RNase-L defends you from intracellular invasion. > > Mycoplasmas are intracellular invaders, therefore this [RNase-l > > Activity] is your defense. Viruses -including adenoviruses - are > > intracellular invaders, therefore this [RNase-L Activity] is your > > defense. Chlamydia pneumoniae is an intracellular invader and your > > defense is RNase-L. Whatever can invade the cell, this [RNase-L > > Activity] is your primary defense. > > " So it could be ANY of those triggers - which is why the > > disease can look different in the beginning. But, everybody merges > > toward this problem [Phase II]. And what characterizes Phase II > is: > > my brain is going; my energy is going; and I hurt - although 10% > > don't have much pain. > > > > > > > > This list is intended for patients to share personal experiences > with each > > other, not to give medical advice. If you are interested in any > treatment > > discussed here, please consult your doctor. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2006 Report Share Posted August 5, 2006 Please note that since 2001 he has been using antibiotics. Nelly, you saw him in 1999. I think we have to credit him with making progress and seeing new things while all the other cfs docs have turned against him for this. a > > > [] Re: RnaseL > > > > <snip> > > Well, the people who devised the RnaseL (Shadolnik, Lebleu etc.) > didn't say > > anything about bacterial infections they only mentioned viruses in > > connection with RnaseL. > > > > Nelly > > Here is an excerpt from a Cheney tape in which he says that RNase-L > dysfunction has many causes: > " Some insult ultimately leads to cell dysfunction, usually > through RNase-L activity. > " Now RNase-L can also, as an intracellular defense mechanism, > be triggered by intracellular bacterial infections, not just > viruses. For example, mycoplasma infections and/or chlamydia > infections. " > Q: So you would not call that the basis of CFS - there are > people out there who say, " The reason you have CFS is because of a > mycoplasma. " > Dr. C: " It could trigger it, but isn't necessarily the > cause of all cases. What seems to be the common denominator is RNase- > L defense mechanisms go up against certain types of intracellular > pathogens that can hit - including viruses, mycoplasmas, chlamydias, > etc. > " And because of that, the nature of this viral infection can > be quite variable. Because it doesn't have to be ONLY one kind of > virus. It doesn't even have to be a virus. It could be a bacterial > infection. IT COULD BE A CHLAMYDIAL PNEUMONIA INFECTION OF THE > SINUSES - THAT COULD TRIGGER IT. Or mycoplasma infection of the > sinuses could trigger it. " > Q: " So it might not even be a viral-induced RNase-L. " > Dr. C: " No. No. It could be viral or other intracellular > micro-organism-induced RNase-L. RNase-L IS THE KEY. > " RNase-L defends you from intracellular invasion. > Mycoplasmas are intracellular invaders, therefore this [RNase-l > Activity] is your defense. Viruses -including adenoviruses - are > intracellular invaders, therefore this [RNase-L Activity] is your > defense. Chlamydia pneumoniae is an intracellular invader and your > defense is RNase-L. Whatever can invade the cell, this [RNase-L > Activity] is your primary defense. > " So it could be ANY of those triggers - which is why the > disease can look different in the beginning. But, everybody merges > toward this problem [Phase II]. And what characterizes Phase II is: > my brain is going; my energy is going; and I hurt - although 10% > don't have much pain. > > > > This list is intended for patients to share personal experiences with each > other, not to give medical advice. If you are interested in any treatment > discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2006 Report Share Posted August 5, 2006 Hello, No one can put things quite as Tony does, but basically I agree with him. You can learn a LOT about what your disease looks like from Cheney, but he has no effective treatment. Where do you live and do you want to see a Lyme doctor, a Brown protocol arthritis doctor, or a cfs doctor? Perhaps I can find you one. a > Amelia > Are you after treatment or hot air.I think if you got in to see > cheney, all he'll do is blow hot air up your a...s.And that's > expenisve hot air.The guy is learning that things are absolutely > stuffed cardiovascular wise, yet all he offers is multivitamins and > is awaiting his pig cell trial therapies...These are the ones that > are going to make the earth spin the other way.The guy is expensive, > and in my opinion generally just gets your mood right, as opposed to > getting your body right.buyer beware, start learning and more > importantly learn to read between the lines of what his patints > claim.. Just a thought, a paula that posts here is vbery familiar > with his offices and his practises.... > tony > > > > > > > > > > > [] Re: RnaseL > > > > > > > > > --- In @y..., " Nelly Pointis " <janel@p...> wrote: > > > <snip> > > > > Well, the people who devised the RnaseL (Shadolnik, Lebleu etc.) > > > didn't say > > > > anything about bacterial infections they only mentioned viruses > in > > > > connection with RnaseL. > > > > > > > > Nelly > > > > > > Here is an excerpt from a Cheney tape in which he says that RNase- > L > > > dysfunction has many causes: > > > " Some insult ultimately leads to cell dysfunction, usually > > > through RNase-L activity. > > > " Now RNase-L can also, as an intracellular defense > > mechanism, > > > be triggered by intracellular bacterial infections, not just > > > viruses. For example, mycoplasma infections and/or chlamydia > > > infections. " > > > Q: So you would not call that the basis of CFS - there > are > > > people out there who say, " The reason you have CFS is because of a > > > mycoplasma. " > > > Dr. C: " It could trigger it, but isn't necessarily the > > > cause of all cases. What seems to be the common denominator is > > RNase- > > > L defense mechanisms go up against certain types of intracellular > > > pathogens that can hit - including viruses, mycoplasmas, > chlamydias, > > > etc. > > > " And because of that, the nature of this viral infection > can > > > be quite variable. Because it doesn't have to be ONLY one kind of > > > virus. It doesn't even have to be a virus. It could be a > bacterial > > > infection. IT COULD BE A CHLAMYDIAL PNEUMONIA INFECTION OF THE > > > SINUSES - THAT COULD TRIGGER IT. Or mycoplasma infection of the > > > sinuses could trigger it. " > > > Q: " So it might not even be a viral-induced RNase-L. " > > > Dr. C: " No. No. It could be viral or other > intracellular > > > micro-organism-induced RNase-L. RNase-L IS THE KEY. > > > " RNase-L defends you from intracellular invasion. > > > Mycoplasmas are intracellular invaders, therefore this [RNase-l > > > Activity] is your defense. Viruses -including adenoviruses - are > > > intracellular invaders, therefore this [RNase-L Activity] is your > > > defense. Chlamydia pneumoniae is an intracellular invader and > your > > > defense is RNase-L. Whatever can invade the cell, this [RNase-L > > > Activity] is your primary defense. > > > " So it could be ANY of those triggers - which is why the > > > disease can look different in the beginning. But, everybody > merges > > > toward this problem [Phase II]. And what characterizes Phase II > > is: > > > my brain is going; my energy is going; and I hurt - although 10% > > > don't have much pain. > > > > > > > > > > > > This list is intended for patients to share personal experiences > > with each > > > other, not to give medical advice. If you are interested in any > > treatment > > > discussed here, please consult your doctor. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2006 Report Share Posted August 5, 2006 Nelly You don't understand me at all unfortunately. I go in to my doctors office and the guy is mesmerised because I talk the language of commonsense. My doctor never ever hears me sound generic-egs. I have this bug and it needs treatment..I go in there and explain that when you've taken a pounding your cirvculation resembles a burns patient and that just as normal people expell body gasses and just move things, we can't, and our 160 pulse rate or weird blood pressure responses are indicators of this..I just basically plan on explaining to my doctor, or whomever, a commonsensical approoach to understanding why we are ill, and of course our hard work required to slowly improve.. Remember we do fall into commonsense medicine when many become fibromyalgic/cfs after an accident or operation.I also notice that ambulance drivers obvbiously know that letting someone 'dehydrate' or loose 'blood volume' may put them in a 'coagulated blood' state, or 'dehydrated state' that can lead onto these crappy ilnesses.This is the reason why I tend to focus on the real as opposed to the fashionable staelth bugs.I also have gone the whole nine yards with bugs and have no problem doing all the different things that many do, like blood smears, and observing what's standing out like dogs b...s. If I spent a week with anyone supposedly suffering these alternative diagnosis, I would have no problem replicating exavctly what Dr. wright or whomever wants me to replicate to observe these alternatives that you want me to focus on.Not only that!!! I would have other microbiologists jumping thru hoops observing this stuff.I have been in the lab at odd times when everyone was waiting behind a microsocope to observe a parasitic infection in a patients stool sample.Everyones like, check this out, check this out... So just don't shift too far away from the real picture and focus on iffy scenario's which require a totally different treatemnnt regime that may not hit the mark.Rememebr we can create super infections by doing the wrong drugs- as oftern happens with many of those on experimental that blame antibiotoics on everything, and only talk nonsense, crap, supplements. > > > > > > [] Re: RnaseL > > > > > > --- In @y..., " Nelly Pointis " <janel@p...> wrote: > > <snip> > > > Well, the people who devised the RnaseL (Shadolnik, Lebleu etc.) > > didn't say > > > anything about bacterial infections they only mentioned viruses in > > > connection with RnaseL. > > > > > > Nelly > > > > Here is an excerpt from a Cheney tape in which he says that RNase-L > > dysfunction has many causes: > > " Some insult ultimately leads to cell dysfunction, usually > > through RNase-L activity. > > " Now RNase-L can also, as an intracellular defense > mechanism, > > be triggered by intracellular bacterial infections, not just > > viruses. For example, mycoplasma infections and/or chlamydia > > infections. " > > Q: So you would not call that the basis of CFS - there are > > people out there who say, " The reason you have CFS is because of a > > mycoplasma. " > > Dr. C: " It could trigger it, but isn't necessarily the > > cause of all cases. What seems to be the common denominator is > RNase- > > L defense mechanisms go up against certain types of intracellular > > pathogens that can hit - including viruses, mycoplasmas, chlamydias, > > etc. > > " And because of that, the nature of this viral infection can > > be quite variable. Because it doesn't have to be ONLY one kind of > > virus. It doesn't even have to be a virus. It could be a bacterial > > infection. IT COULD BE A CHLAMYDIAL PNEUMONIA INFECTION OF THE > > SINUSES - THAT COULD TRIGGER IT. Or mycoplasma infection of the > > sinuses could trigger it. " > > Q: " So it might not even be a viral-induced RNase-L. " > > Dr. C: " No. No. It could be viral or other intracellular > > micro-organism-induced RNase-L. RNase-L IS THE KEY. > > " RNase-L defends you from intracellular invasion. > > Mycoplasmas are intracellular invaders, therefore this [RNase-l > > Activity] is your defense. Viruses -including adenoviruses - are > > intracellular invaders, therefore this [RNase-L Activity] is your > > defense. Chlamydia pneumoniae is an intracellular invader and your > > defense is RNase-L. Whatever can invade the cell, this [RNase-L > > Activity] is your primary defense. > > " So it could be ANY of those triggers - which is why the > > disease can look different in the beginning. But, everybody merges > > toward this problem [Phase II]. And what characterizes Phase II > is: > > my brain is going; my energy is going; and I hurt - although 10% > > don't have much pain. > > > > > > > > This list is intended for patients to share personal experiences > with each > > other, not to give medical advice. If you are interested in any > treatment > > discussed here, please consult your doctor. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 > > > > > > [] Re: RnaseL > > > > > > > > > --- In @y..., " Nelly Pointis " <janel@p...> wrote: > > > <snip> > > > > Well, the people who devised the RnaseL (Shadolnik, Lebleu etc.) > > > didn't say > > > > anything about bacterial infections they only mentioned viruses > in > > > > connection with RnaseL. > > > > > > > > Nelly > > > > > > Here is an excerpt from a Cheney tape in which he says that RNase- > L > > > dysfunction has many causes: > > > " Some insult ultimately leads to cell dysfunction, usually > > > through RNase-L activity. > > > " Now RNase-L can also, as an intracellular defense > > mechanism, > > > be triggered by intracellular bacterial infections, not just > > > viruses. For example, mycoplasma infections and/or chlamydia > > > infections. " > > > Q: So you would not call that the basis of CFS - there > are > > > people out there who say, " The reason you have CFS is because of a > > > mycoplasma. " > > > Dr. C: " It could trigger it, but isn't necessarily the > > > cause of all cases. What seems to be the common denominator is > > RNase- > > > L defense mechanisms go up against certain types of intracellular > > > pathogens that can hit - including viruses, mycoplasmas, > chlamydias, > > > etc. > > > " And because of that, the nature of this viral infection > can > > > be quite variable. Because it doesn't have to be ONLY one kind of > > > virus. It doesn't even have to be a virus. It could be a > bacterial > > > infection. IT COULD BE A CHLAMYDIAL PNEUMONIA INFECTION OF THE > > > SINUSES - THAT COULD TRIGGER IT. Or mycoplasma infection of the > > > sinuses could trigger it. " > > > Q: " So it might not even be a viral-induced RNase-L. " > > > Dr. C: " No. No. It could be viral or other > intracellular > > > micro-organism-induced RNase-L. RNase-L IS THE KEY. > > > " RNase-L defends you from intracellular invasion. > > > Mycoplasmas are intracellular invaders, therefore this [RNase-l > > > Activity] is your defense. Viruses -including adenoviruses - are > > > intracellular invaders, therefore this [RNase-L Activity] is your > > > defense. Chlamydia pneumoniae is an intracellular invader and > your > > > defense is RNase-L. Whatever can invade the cell, this [RNase-L > > > Activity] is your primary defense. > > > " So it could be ANY of those triggers - which is why the > > > disease can look different in the beginning. But, everybody > merges > > > toward this problem [Phase II]. And what characterizes Phase II > > is: > > > my brain is going; my energy is going; and I hurt - although 10% > > > don't have much pain. > > > > > > > > > > > > This list is intended for patients to share personal experiences > > with each > > > other, not to give medical advice. If you are interested in any > > treatment > > > discussed here, please consult your doctor. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Amelia, I am not sure what you are asking me. I never said Dr. Cheney was full of hot air. I said he has an excellent understanding of our diseases but has no effective treatment. Yes, I lived 30 miles from Dr. Cheney's office for quite some time. No, I did not see patients improving on his treatments. The Charlotte support group was exceedingly depressing. My husband freaked out when they started selling CFIDS tee shirts. I was getting better. They were getting tee shirts. I offered to see if I could find you a good doctor in your area wherever that might be. No, I don't think I have almost had heart failure, just severe blood pressure disorder. What test did you have run to diagnose the " compensatory cardiomyopathy? " I haven't kept up with his latest studies. I really did not want to think that I had an open hole between the chambers of my heart. Besides I had a heart cath a couple of years ago showing a completely normal heart, so I figured I didn't have his latest finding. How many hearts have they checked for this defect? Did you have it? a > Dear Dumb, > > I believe that you are the one full of " hot air " ...as Dr. Cheney has > described my situation to a tee, and " compensatory cardiomyopathy " is > a hard diagnosis to treat, as CFS is the solution, at this > point...but I am not one who likes to argue..it is a waste of my > limited time. > > However, a... > > I would be interested to know, if you were located where Dr. Cheney > practices, what specifically, has he done that shows he is full > of " hot air " ? and have you, actually, had overt symptoms of near > heart failure? and I do not mean cardiac herxing, as I have not been > on any anti-microbial treatments for a good long time. > > Amelia> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Dearest AMelia. I'm very excited that you are in good hands visiting your fav. doctor. Personally someone at the heart of the incline village episode wherby many hundreds of people were struck down with something obviously resembling a respiratory pathogen, that didn't get diagnosed, and now takes out hearts and they are classified cardiomyoptahy(often viral pathology)... I don't know what to say, or where to start.Did you get magnesium, coq10 supplementation from your hero?What is the treatment of choice, cup your hands in front of your face?Did you read Nelly explaining how her long term antibiotic protocol fixed her heart arrythmia? Or would you like your doctors approach, blow hot air up your rear, and get someone to fit you up with a pacemaker. Amelia everyone on the experimental site has some form of festering infection, many of whom are Cheney patients....why after 30 years can't he diagnose a virus/bacteria /fungi that may be at the heart of all this mess. Also, I was thrown off the cfs about forum 5 years earlier for suggesting that having an 80/50 90/50 blood pressure equals a possable endocarditis (infection of the heart).. I also mentioned frequently that a pulse rate of over 90 beats per minute is called a tachycardia and it's also a sign of infecion... mine sat at 100-120 for the first year.All this information was found at the hospital medical library.......When you strongly feel that your patient is suffering from this, you do a paracentisis and culture the fluid from the pericardial sac around the heart. Viral and bacterial cultures are possable.Another thing that I learnt is that your normal echocardiograph is useless and you can do a couple of extended echo cardiographs that come in from the top of the heart, and the results are more precise...What do you do? I can't wait to run off and take some more magnesium..and practise my cupping techniques. tony > > > > <snip> > > > > > Well, the people who devised the RnaseL (Shadolnik, Lebleu > etc.) > > > > didn't say > > > > > anything about bacterial infections they only mentioned > viruses > > in > > > > > connection with RnaseL. > > > > > > > > > > Nelly > > > > > > > > Here is an excerpt from a Cheney tape in which he says that > RNase- > > L > > > > dysfunction has many causes: > > > > " Some insult ultimately leads to cell dysfunction, usually > > > > through RNase-L activity. > > > > " Now RNase-L can also, as an intracellular defense > > > mechanism, > > > > be triggered by intracellular bacterial infections, not just > > > > viruses. For example, mycoplasma infections and/or chlamydia > > > > infections. " > > > > Q: So you would not call that the basis of CFS - there > > are > > > > people out there who say, " The reason you have CFS is because > of a > > > > mycoplasma. " > > > > Dr. C: " It could trigger it, but isn't necessarily the > > > > cause of all cases. What seems to be the common denominator is > > > RNase- > > > > L defense mechanisms go up against certain types of > intracellular > > > > pathogens that can hit - including viruses, mycoplasmas, > > chlamydias, > > > > etc. > > > > " And because of that, the nature of this viral > infection > > can > > > > be quite variable. Because it doesn't have to be ONLY one kind > of > > > > virus. It doesn't even have to be a virus. It could be a > > bacterial > > > > infection. IT COULD BE A CHLAMYDIAL PNEUMONIA INFECTION OF THE > > > > SINUSES - THAT COULD TRIGGER IT. Or mycoplasma infection of the > > > > sinuses could trigger it. " > > > > Q: " So it might not even be a viral-induced RNase- L. " > > > > Dr. C: " No. No. It could be viral or other > > intracellular > > > > micro-organism-induced RNase-L. RNase-L IS THE KEY. > > > > " RNase-L defends you from intracellular invasion. > > > > Mycoplasmas are intracellular invaders, therefore this [RNase- l > > > > Activity] is your defense. Viruses -including adenoviruses - > are > > > > intracellular invaders, therefore this [RNase-L Activity] is > your > > > > defense. Chlamydia pneumoniae is an intracellular invader and > > your > > > > defense is RNase-L. Whatever can invade the cell, this [RNase- L > > > > Activity] is your primary defense. > > > > " So it could be ANY of those triggers - which is why the > > > > disease can look different in the beginning. But, everybody > > merges > > > > toward this problem [Phase II]. And what characterizes Phase > II > > > is: > > > > my brain is going; my energy is going; and I hurt - although 10% > > > > don't have much pain. > > > > > > > > > > > > > > > > This list is intended for patients to share personal > experiences > > > with each > > > > other, not to give medical advice. If you are interested in > any > > > treatment > > > > discussed here, please consult your doctor. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Tony, I don't know about Amelia, but my wife was a patient of Cheney's before he developed his cardiomyopathy theory, and he gave both CoQ10 and Magnesimum (the latter intra muscular). He was big on injectable B12 in the form of hydroxycobalmin as well. The latter two were things that helped my wife's CFS symptoms about 5% each and she still takes them. My assessment of Cheney is that he deserves credit along with Dr sen, with whom he shared a practice in Incline Village, for recognizing that there was a serious epidemic in progress and attempting to get the CDC involved in determining its cause. He also deserves credit for devoting his life to seeking effective treatments, ever since. Alas, I must agree that this quest has been basically a failure. My wife did not improve under his care, and we did not see others improve. And an appointment with Cheney consists mostly of Cheney "holding forth" about this year's exciting new treatment, on your nickel. He is a relentlessly positive individual, always, thinking, always coming up with things to try ... things he is sure will be a breakthrough Any Day Now. And he really believes it. His interest in the cardiac angle has a lot to do with the fact that he recently had a heart transplant. Ironically, the cause was a viral cardiac infection. Bottom line, in this writer's view ... the man is well meaning and sincere, and Never Gives Up ... yet has little more to offer than any other doctor treating chronic illness. And to my knowledge he does not screen or treat for chronic infections of any kind, although as an integrative medicine type, he is certainly aware of Lyme, and the work done by, for instance, Schoemaker on mold and environmental illness. He just doesn't, for whatever reason, go there, unless his own near-death experience has modified that in recent years. I also feel constrained to repeat, that a diagnosis of CFS / CFIDS / ME is fairly unhelpful to anyone thanks to lousy (and deteriorating) case definitions. Case in point, the first time my wife visited Cheney's clinic, the patient that came in after my wife actually drove herself up from Atlanta, and still had the energy to talk a mile a minute. One of those people you just can't get away from. This woman supposedly had CFS. And with the lax case definition, she probably qualified. When you have such a heterogenous patient population, with independently traveling chatterboxes on one end and people who are bed-bound and can barely speak on the other end, what useful conclusions can you make in studying the syndrome? --Bob dumbaussie2000 wrote: Dearest AMelia. I'm very excited that you are in good hands visiting your fav. doctor. Personally someone at the heart of the incline village episode wherby many hundreds of people were struck down with something obviously resembling a respiratory pathogen, that didn't get diagnosed, and now takes out hearts and they are classified cardiomyoptahy(often viral pathology)... I don't know what to say, or where to start.Did you get magnesium, coq10 supplementation from your hero?What is the treatment of choice, cup your hands in front of your face?Did you read Nelly explaining how her long term antibiotic protocol fixed her heart arrythmia? Or would you like your doctors approach, blow hot air up your rear, and get someone to fit you up with a pacemaker. Amelia everyone on the experimental site has some form of festering infection, many of whom are Cheney patients....why after 30 years can't he diagnose a virus/bacteria /fungi that may be at the heart of all this mess. Also, I was thrown off the cfs about forum 5 years earlier for suggesting that having an 80/50 90/50 blood pressure equals a possable endocarditis (infection of the heart).. I also mentioned frequently that a pulse rate of over 90 beats per minute is called a tachycardia and it's also a sign of infecion... mine sat at 100-120 for the first year.All this information was found at the hospital medical library.......When you strongly feel that your patient is suffering from this, you do a paracentisis and culture the fluid from the pericardial sac around the heart. Viral and bacterial cultures are possable.Another thing that I learnt is that your normal echocardiograph is useless and you can do a couple of extended echo cardiographs that come in from the top of the heart, and the results are more precise...What do you do? I can't wait to run off and take some more magnesium..and practise my cupping techniques. tony > > > > <snip> > > > > > Well, the people who devised the RnaseL (Shadolnik, Lebleu > etc.) > > > > didn't say > > > > > anything about bacterial infections they only mentioned > viruses > > in > > > > > connection with RnaseL. > > > > > > > > > > Nelly > > > > > > > > Here is an excerpt from a Cheney tape in which he says that > RNase- > > L > > > > dysfunction has many causes: > > > > "Some insult ultimately leads to cell dysfunction, usually > > > > through RNase-L activity. > > > > "Now RNase-L can also, as an intracellular defense > > > mechanism, > > > > be triggered by intracellular bacterial infections, not just > > > > viruses. For example, mycoplasma infections and/or chlamydia > > > > infections." > > > > Q: So you would not call that the basis of CFS - there > > are > > > > people out there who say, "The reason you have CFS is because > of a > > > > mycoplasma." > > > > Dr. C: "It could trigger it, but isn't necessarily the > > > > cause of all cases. What seems to be the common denominator is > > > RNase- > > > > L defense mechanisms go up against certain types of > intracellular > > > > pathogens that can hit - including viruses, mycoplasmas, > > chlamydias, > > > > etc. > > > > "And because of that, the nature of this viral > infection > > can > > > > be quite variable. Because it doesn't have to be ONLY one kind > of > > > > virus. It doesn't even have to be a virus. It could be a > > bacterial > > > > infection. IT COULD BE A CHLAMYDIAL PNEUMONIA INFECTION OF THE > > > > SINUSES - THAT COULD TRIGGER IT. Or mycoplasma infection of the > > > > sinuses could trigger it." > > > > Q: "So it might not even be a viral-induced RNase- L." > > > > Dr. C: "No. No. It could be viral or other > > intracellular > > > > micro-organism-induced RNase-L. RNase-L IS THE KEY. > > > > "RNase-L defends you from intracellular invasion. > > > > Mycoplasmas are intracellular invaders, therefore this [RNase- l > > > > Activity] is your defense. Viruses -including adenoviruses - > are > > > > intracellular invaders, therefore this [RNase-L Activity] is > your > > > > defense. Chlamydia pneumoniae is an intracellular invader and > > your > > > > defense is RNase-L. Whatever can invade the cell, this [RNase- L > > > > Activity] is your primary defense. > > > > "So it could be ANY of those triggers - which is why the > > > > disease can look different in the beginning. But, everybody > > merges > > > > toward this problem [Phase II]. And what characterizes Phase > II > > > is: > > > > my brain is going; my energy is going; and I hurt - although 10% > > > > don't have much pain. > > > > > > > > > > > > > > > > This list is intended for patients to share personal > experiences > > > with each > > > > other, not to give medical advice. If you are interested in > any > > > treatment > > > > discussed here, please consult your doctor. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Bob I'm not a medical person, when I was struck down with cfs/fibromyalgia (basically a painfull nightmare scenario) I devised ways and means to get to the bottom of this bad joke.I studied at the medical library which claimed that INFECTIOUS ARTHRITIS CONDITIONS in adults are mainly caused by gonococci and staphylococci. My main objective now was to get my blood cultured for these organisms- That's 'blood cultures', (something cheney wouldn't know exists) because in my five years of reading forums it doesn't come up anywhere as something to try... although I must admit it's difficulkt unless you have millions of organisms turning your blood culture bottles white- they assume you grew nothing in your blood unless this occurs.But I was lucky and whamo there in my blood was the staphylococci.. causing me neck stiffness and sore joints(infectious arthritis).This organism is also the organism causing me sinusitis and all the gunk constantly travelling down the back of my throat. What would I want to do other than study how to get rid of a huge infection.. Most proffesional(pharmacists/microbiologists) people that know about big infections also explain the difficulty in treating them. Anyway to cut the story short I am currently 110% normal and have no symptoms of ilness by being aggresive at treating the flippin' obvious. So basically if cheney bothered 30 years ago to take a symptom and investigate further and treat and monitor, you'd have none of this nonsense called cfs because many of his patients would be screaming from the rafters how they felt better while treatment was being undertaken. > > > > > > <snip> > > > > > > > Well, the people who devised the RnaseL (Shadolnik, Lebleu > > > etc.) > > > > > > didn't say > > > > > > > anything about bacterial infections they only mentioned > > > viruses > > > > in > > > > > > > connection with RnaseL. > > > > > > > > > > > > > > Nelly > > > > > > > > > > > > Here is an excerpt from a Cheney tape in which he says that > > > RNase- > > > > L > > > > > > dysfunction has many causes: > > > > > > " Some insult ultimately leads to cell dysfunction, usually > > > > > > through RNase-L activity. > > > > > > " Now RNase-L can also, as an intracellular defense > > > > > mechanism, > > > > > > be triggered by intracellular bacterial infections, not just > > > > > > viruses. For example, mycoplasma infections and/or chlamydia > > > > > > infections. " > > > > > > Q: So you would not call that the basis of CFS - > > there > > > > are > > > > > > people out there who say, " The reason you have CFS is because > > > of a > > > > > > mycoplasma. " > > > > > > Dr. C: " It could trigger it, but isn't necessarily > > the > > > > > > cause of all cases. What seems to be the common denominator > > is > > > > > RNase- > > > > > > L defense mechanisms go up against certain types of > > > intracellular > > > > > > pathogens that can hit - including viruses, mycoplasmas, > > > > chlamydias, > > > > > > etc. > > > > > > " And because of that, the nature of this viral > > > infection > > > > can > > > > > > be quite variable. Because it doesn't have to be ONLY one > > kind > > > of > > > > > > virus. It doesn't even have to be a virus. It could be a > > > > bacterial > > > > > > infection. IT COULD BE A CHLAMYDIAL PNEUMONIA INFECTION OF > > THE > > > > > > SINUSES - THAT COULD TRIGGER IT. Or mycoplasma infection of > > the > > > > > > sinuses could trigger it. " > > > > > > Q: " So it might not even be a viral-induced RNase- > > L. " > > > > > > Dr. C: " No. No. It could be viral or other > > > > intracellular > > > > > > micro-organism-induced RNase-L. RNase-L IS THE KEY. > > > > > > " RNase-L defends you from intracellular invasion. > > > > > > Mycoplasmas are intracellular invaders, therefore this [RNase- > > l > > > > > > Activity] is your defense. Viruses -including adenoviruses - > > > are > > > > > > intracellular invaders, therefore this [RNase-L Activity] is > > > your > > > > > > defense. Chlamydia pneumoniae is an intracellular invader > > and > > > > your > > > > > > defense is RNase-L. Whatever can invade the cell, this [RNase- > > L > > > > > > Activity] is your primary defense. > > > > > > " So it could be ANY of those triggers - which is why the > > > > > > disease can look different in the beginning. But, everybody > > > > merges > > > > > > toward this problem [Phase II]. And what characterizes > > Phase > > > II > > > > > is: > > > > > > my brain is going; my energy is going; and I hurt - although > > 10% > > > > > > don't have much pain. > > > > > > > > > > > > > > > > > > > > > > > > This list is intended for patients to share personal > > > experiences > > > > > with each > > > > > > other, not to give medical advice. If you are interested in > > > any > > > > > treatment > > > > > > discussed here, please consult your doctor. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 I would hope they did cultures and smears at Incline. Maybe they didnt see anything on them. I think Cheney and or wrote a long report on the epidemic. One could look there for such information. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 I think the problem we are up against is that even smart doctors like Cheney do only routine lab tests for various infections. In the mid 90s he and others looked at the mycoplasma issue. I know a surgeon from Knoxville who was Cheney's patient. He was one of the few who talked Cheney into trying a lot of antibiotics on him. Unfortunately for him and a lot of the rest of us this patient did not recover on antibiotics. I was treated by Dr. Flechas at this same time. He was involved with Aristo Vojdani in a research study. I tested positive by PCR for the mycoplasma, got antibiotics, knew I had to take them a couple of years at least and began to recover. If I had quit the antibiotics at the end of 4 months I would still be like the patients I saw for years at the Charlotte support groups - dragging in, walking with canes, in wheel chairs, spaced out, on various brain altering drugs trying desperately to keep going from one hour to the next. Did Cheney et al test their patients? Do they? Well, just to give you one clue - ask them what lab they use to test all their cfs and fms patients for borrelia. How much do you want to bet it is Quest or LabCorp. NO WONDER THERE ARE NO DIAGNOSES. And, yes, I am yelling. It makes me sick to realize what is being done to this community who have a chronic infection of one sort or another. Tony, move over, I want to join your camp. a > > I would hope they did cultures and smears at Incline. Maybe they didnt > see anything on them. I think Cheney and or wrote a long > report on the epidemic. One could look there for such information. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Well now some 8 to 10 years too late we have figured out that this might be a useful band-wagon, too. The problem for my wife is that she is so desperately ill with MCS on top of CFS, that she is reactive to almost everything. For example, just 50 mg of mino causes her *violent* stomach pain that takes weeks to blow over. We have a doctor who wants to treat her for Lyme and myco, but feels like his hands are tied because virtually everything he gives her makes her ill in other ways. Even healthy people struggle with die-off toxins; my wife can scarcely detox at all. Anyone else have this experience where their detox pathways are shot, no elbow room for anything? Anyone know a way out? --Bob pjeanneus wrote: I think the problem we are up against is that even smart doctors like Cheney do only routine lab tests for various infections. In the mid 90s he and others looked at the mycoplasma issue. I know a surgeon from Knoxville who was Cheney's patient. He was one of the few who talked Cheney into trying a lot of antibiotics on him. Unfortunately for him and a lot of the rest of us this patient did not recover on antibiotics. I was treated by Dr. Flechas at this same time. He was involved with Aristo Vojdani in a research study. I tested positive by PCR for the mycoplasma, got antibiotics, knew I had to take them a couple of years at least and began to recover. If I had quit the antibiotics at the end of 4 months I would still be like the patients I saw for years at the Charlotte support groups - dragging in, walking with canes, in wheel chairs, spaced out, on various brain altering drugs trying desperately to keep going from one hour to the next. Did Cheney et al test their patients? Do they? Well, just to give you one clue - ask them what lab they use to test all their cfs and fms patients for borrelia. How much do you want to bet it is Quest or LabCorp. NO WONDER THERE ARE NO DIAGNOSES. And, yes, I am yelling. It makes me sick to realize what is being done to this community who have a chronic infection of one sort or another. Tony, move over, I want to join your camp. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 a You know most of medicine has been culture and SENSITIVITIES for giving antibiotics. If I threw out this approach I can only get you a bigger infection, unless you did the tetracycline family of antibiotics.The tetracyclines will keep cuttiong down infections- but to a certain point...they need the sensitivity test to work out the better angles of attack.Rotating tetracyclines is a small positive IMO.Also if there was a no pay/no well policy with doctors like this, in a couple of months the whole picture would change. It's also sad that they throw out THE ACTUAL COMMONSENSE PART- which is that a group of people got exposed to an agent that knocked them out..Rich I hope your reading this?..this genetic deformation angle and the rest of the crap being fed up by the shovel load is making me puke on my keyboard...The worst part is that they are going to solve the worlds problems without the tough harsh drugs, but flowers and poppies and a few wild weeds, woo hoo i can feel a commune coming on. > > I think the problem we are up against is that even smart doctors like > Cheney do only routine lab tests for various infections. In the > mid 90s he and others looked at the mycoplasma issue. I know a surgeon > from Knoxville who was Cheney's patient. He was one of the few who > talked Cheney into trying a lot of antibiotics on him. Unfortunately > for him and a lot of the rest of us this patient did not recover on > antibiotics. > > I was treated by Dr. Flechas at this same time. He was involved > with Aristo Vojdani in a research study. I tested positive by PCR for > the mycoplasma, got antibiotics, knew I had to take them a couple of > years at least and began to recover. If I had quit the antibiotics at > the end of 4 months I would still be like the patients I saw for years > at the Charlotte support groups - dragging in, walking with canes, in > wheel chairs, spaced out, on various brain altering drugs trying > desperately to keep going from one hour to the next. > > Did Cheney et al test their patients? Do they? Well, just to give you > one clue - ask them what lab they use to test all their cfs and fms > patients for borrelia. How much do you want to bet it is Quest or > LabCorp. NO WONDER THERE ARE NO DIAGNOSES. And, yes, I am yelling. It > makes me sick to realize what is being done to this community who have > a chronic infection of one sort or another. > > Tony, move over, I want to join your camp. > > a > > > > > > I would hope they did cultures and smears at Incline. Maybe they > didnt > > see anything on them. I think Cheney and or wrote a long > > report on the epidemic. One could look there for such information. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Bob, Yes, I think there is hope. But it may be like walking a tightrope. Mino can be the worst to start with. If she has food sensitivities how about trying a diet with no gluten? She may not need this forever - just until she is doing better. Can she tolerate dairy? I would suggest finding a whole milk yogurt such as Strauss organic European style. Then start her on Zithromax and see if she tolerates it well. If she does she can stay on it for a couple of years. During this time she may want to try minocycline again. Once her gut heals you may be surprised at what she can take that now makes her sick. Are you in a home with mold? Do you have any idea? She probably must get away from any source of mold at least until she begins to recover. Please reply to my ideas, because if they seem like they don't fit her picture I am sure someone on this list will have others!!!! a > > Well now some 8 to 10 years too late we have figured out that this might > be a useful band-wagon, too. The problem for my wife is that she is so > desperately ill with MCS on top of CFS, that she is reactive to almost > everything. For example, just 50 mg of mino causes her *violent* > stomach pain that takes weeks to blow over. We have a doctor who wants > to treat her for Lyme and myco, but feels like his hands are tied > because virtually everything he gives her makes her ill in other ways. > Even healthy people struggle with die-off toxins; my wife can scarcely > detox at all. > > Anyone else have this experience where their detox pathways are shot, no > elbow room for anything? Anyone know a way out? > > --Bob > > pjeanneus wrote: > > > > I think the problem we are up against is that even smart doctors like > > Cheney do only routine lab tests for various infections. In the > > mid 90s he and others looked at the mycoplasma issue. I know a surgeon > > from Knoxville who was Cheney's patient. He was one of the few who > > talked Cheney into trying a lot of antibiotics on him. Unfortunately > > for him and a lot of the rest of us this patient did not recover on > > antibiotics. > > > > I was treated by Dr. Flechas at this same time. He was involved > > with Aristo Vojdani in a research study. I tested positive by PCR for > > the mycoplasma, got antibiotics, knew I had to take them a couple of > > years at least and began to recover. If I had quit the antibiotics at > > the end of 4 months I would still be like the patients I saw for years > > at the Charlotte support groups - dragging in, walking with canes, in > > wheel chairs, spaced out, on various brain altering drugs trying > > desperately to keep going from one hour to the next. > > > > Did Cheney et al test their patients? Do they? Well, just to give you > > one clue - ask them what lab they use to test all their cfs and fms > > patients for borrelia. How much do you want to bet it is Quest or > > LabCorp. NO WONDER THERE ARE NO DIAGNOSES. And, yes, I am yelling. It > > makes me sick to realize what is being done to this community who have > > a chronic infection of one sort or another. > > > > Tony, move over, I want to join your camp. > > > > a > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Bob It's all in the slime. The srtuff that keeps drippin down her throat that is being manufactured in the sinus. Unless she has dried up like those sjogren's patients?The sinus and respiratory system are loaded with pathogens that are highly antimicrobial resistant and jump at the first sign or hint of incoming chemical threat.I would go a heavy, salty, saline nebulizer attack to break some of this stuff down..Just reproduce an ocean mist on her respiratory system. tony > > > > I think the problem we are up against is that even smart doctors like > > Cheney do only routine lab tests for various infections. In the > > mid 90s he and others looked at the mycoplasma issue. I know a surgeon > > from Knoxville who was Cheney's patient. He was one of the few who > > talked Cheney into trying a lot of antibiotics on him. Unfortunately > > for him and a lot of the rest of us this patient did not recover on > > antibiotics. > > > > I was treated by Dr. Flechas at this same time. He was involved > > with Aristo Vojdani in a research study. I tested positive by PCR for > > the mycoplasma, got antibiotics, knew I had to take them a couple of > > years at least and began to recover. If I had quit the antibiotics at > > the end of 4 months I would still be like the patients I saw for years > > at the Charlotte support groups - dragging in, walking with canes, in > > wheel chairs, spaced out, on various brain altering drugs trying > > desperately to keep going from one hour to the next. > > > > Did Cheney et al test their patients? Do they? Well, just to give you > > one clue - ask them what lab they use to test all their cfs and fms > > patients for borrelia. How much do you want to bet it is Quest or > > LabCorp. NO WONDER THERE ARE NO DIAGNOSES. And, yes, I am yelling. It > > makes me sick to realize what is being done to this community who have > > a chronic infection of one sort or another. > > > > Tony, move over, I want to join your camp. > > > > a > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 She is not eating any gluten. She is down to maybe a half dozen foods she can tolerate, basically organic meat and greens. House is mold free, confirmed by recent tests. No carpeting, 100% porcelain tile, threw half our personal possessions out. Everything that can be done there, has definitely been done. In addition we live in the Sonoran desert. She can and does drink organic milk and yogurt. Zithro ... by itself? Maybe ... the problem is that if it works, and can be tolerated for any length of time, it is going to produce die off, and she has to get rid of the toxins somehow. That is what has the doctor stumped. Last September her autonomic nervous system went bonkers -- all sorts of arrhythmias, BP fluctuation, loss of body temp control ... presently she can't read, can't watch a video, listen to music ... it's too much input. Overloads her. This is neurotoxicity. I think this has to be dealt with somehow before we can add more toxins into the mix. I assume that the MCS that's developed over the past 5 or 6 years reflects the inability to keep bad stuff out, and to get rid of it once it's in. Also as a practical matter, after 30 years of chronic illness, starting with sudden-onset CFS, she is pretty much worn down to the nubbins. Not much fight left. And this is going to be a hell of a fight. --Bob pjeanneus wrote: Bob, Yes, I think there is hope. But it may be like walking a tightrope. Mino can be the worst to start with. If she has food sensitivities how about trying a diet with no gluten? She may not need this forever - just until she is doing better. Can she tolerate dairy? I would suggest finding a whole milk yogurt such as Strauss organic European style. Then start her on Zithromax and see if she tolerates it well. If she does she can stay on it for a couple of years. During this time she may want to try minocycline again. Once her gut heals you may be surprised at what she can take that now makes her sick. Are you in a home with mold? Do you have any idea? She probably must get away from any source of mold at least until she begins to recover. Please reply to my ideas, because if they seem like they don't fit her picture I am sure someone on this list will have others!!!! a > > Well now some 8 to 10 years too late we have figured out that this might > be a useful band-wagon, too. The problem for my wife is that she is so > desperately ill with MCS on top of CFS, that she is reactive to almost > everything. For example, just 50 mg of mino causes her *violent* > stomach pain that takes weeks to blow over. We have a doctor who wants > to treat her for Lyme and myco, but feels like his hands are tied > because virtually everything he gives her makes her ill in other ways. > Even healthy people struggle with die-off toxins; my wife can scarcely > detox at all. > > Anyone else have this experience where their detox pathways are shot, no > elbow room for anything? Anyone know a way out? > > --Bob > > pjeanneus wrote: > > > > I think the problem we are up against is that even smart doctors like > > Cheney do only routine lab tests for various infections. In the > > mid 90s he and others looked at the mycoplasma issue. I know a surgeon > > from Knoxville who was Cheney's patient. He was one of the few who > > talked Cheney into trying a lot of antibiotics on him. Unfortunately > > for him and a lot of the rest of us this patient did not recover on > > antibiotics. > > > > I was treated by Dr. Flechas at this same time. He was involved > > with Aristo Vojdani in a research study. I tested positive by PCR for > > the mycoplasma, got antibiotics, knew I had to take them a couple of > > years at least and began to recover. If I had quit the antibiotics at > > the end of 4 months I would still be like the patients I saw for years > > at the Charlotte support groups - dragging in, walking with canes, in > > wheel chairs, spaced out, on various brain altering drugs trying > > desperately to keep going from one hour to the next. > > > > Did Cheney et al test their patients? Do they? Well, just to give you > > one clue - ask them what lab they use to test all their cfs and fms > > patients for borrelia. How much do you want to bet it is Quest or > > LabCorp. NO WONDER THERE ARE NO DIAGNOSES. And, yes, I am yelling. It > > makes me sick to realize what is being done to this community who have > > a chronic infection of one sort or another. > > > > Tony, move over, I want to join your camp. > > > > a > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Except that nebulizers have plastic tubing, to which she is reactive. That's the trouble once you are reactive to VOC's -- they are everywhere. Tony, people with MCS can and do react in terms of asthma attacks and the like, but that is often the least of it. The basic problem is the wrong molecules crossing the blood/brain barrier, that getting in through the gut. The responses include brain fog / cognitive difficulties, tremors and other neurotoxic syx, digestive problems, skin reactions, general inflammatory responses, etc. It's thought that the process starts with what's called "kindling" ... causing neurons to fire at lower and lower thresholds. An excellent overview is here: www.ilru.org/html/publications/bookshelf/MCS.html Are pathogens involved? Probably. Whether MCS itself is sustained by pathogens, or merely set in motion by them, or exacerbated by them, I don't pretend to know. My wife definitely has Lyme and mycoplasma, and needs abx ... the MCS overlay gets in the way of that. --Bob dumbaussie2000 wrote: Bob It's all in the slime. The srtuff that keeps drippin down her throat that is being manufactured in the sinus. Unless she has dried up like those sjogren's patients?The sinus and respiratory system are loaded with pathogens that are highly antimicrobial resistant and jump at the first sign or hint of incoming chemical threat.I would go a heavy, salty, saline nebulizer attack to break some of this stuff down..Just reproduce an ocean mist on her respiratory system. tony > > > > I think the problem we are up against is that even smart doctors like > > Cheney do only routine lab tests for various infections. In the > > mid 90s he and others looked at the mycoplasma issue. I know a surgeon > > from Knoxville who was Cheney's patient. He was one of the few who > > talked Cheney into trying a lot of antibiotics on him. Unfortunately > > for him and a lot of the rest of us this patient did not recover on > > antibiotics. > > > > I was treated by Dr. Flechas at this same time. He was involved > > with Aristo Vojdani in a research study. I tested positive by PCR for > > the mycoplasma, got antibiotics, knew I had to take them a couple of > > years at least and began to recover. If I had quit the antibiotics at > > the end of 4 months I would still be like the patients I saw for years > > at the Charlotte support groups - dragging in, walking with canes, in > > wheel chairs, spaced out, on various brain altering drugs trying > > desperately to keep going from one hour to the next. > > > > Did Cheney et al test their patients? Do they? Well, just to give you > > one clue - ask them what lab they use to test all their cfs and fms > > patients for borrelia. How much do you want to bet it is Quest or > > LabCorp. NO WONDER THERE ARE NO DIAGNOSES. And, yes, I am yelling. It > > makes me sick to realize what is being done to this community who have > > a chronic infection of one sort or another. > > > > Tony, move over, I want to join your camp. > > > > a > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Bob Just try at any cost to create an ocean like mist from a nebulizer away from her but near enough to gauge 'good or bad' reaction. I know personally that I no longer have the allergy aspect of my ilness by controlling what is known as quorum sensing that bacteria use to communicate. Quorom sensing- It's like, ready boys, got the signal, let's fire off our defences now..The slime is like a grid of wiring that enables these signals to travel around the head and thru to the lungs and wherever else. Bob once you establish the crap fed upto you is just not what they say... you'll appreciate the patients response may be extremely normal, yet you may learn to appreciate the bacterial toxic assault is at the heart of all this mess.Also these toxins will make you vasoconstrict(hormones) constantly leaving you no blood volume and a form of dehydration.The toxins will also often show up as borderlkine haemoglobin because they can destroy a good percentage of red cells and leave many damaged cells circulating making breathing a step harder again..alongside the lung infection/inflammation. have > > > > > > > > I think the problem we are up against is that even smart doctors > > like > > > > Cheney do only routine lab tests for various infections. In > > the > > > > mid 90s he and others looked at the mycoplasma issue. I know a > > surgeon > > > > from Knoxville who was Cheney's patient. He was one of the few who > > > > talked Cheney into trying a lot of antibiotics on him. > > Unfortunately > > > > for him and a lot of the rest of us this patient did not recover > > on > > > > antibiotics. > > > > > > > > I was treated by Dr. Flechas at this same time. He was > > involved > > > > with Aristo Vojdani in a research study. I tested positive by PCR > > for > > > > the mycoplasma, got antibiotics, knew I had to take them a couple > > of > > > > years at least and began to recover. If I had quit the > > antibiotics at > > > > the end of 4 months I would still be like the patients I saw for > > years > > > > at the Charlotte support groups - dragging in, walking with > > canes, in > > > > wheel chairs, spaced out, on various brain altering drugs trying > > > > desperately to keep going from one hour to the next. > > > > > > > > Did Cheney et al test their patients? Do they? Well, just to give > > you > > > > one clue - ask them what lab they use to test all their cfs and > > fms > > > > patients for borrelia. How much do you want to bet it is Quest or > > > > LabCorp. NO WONDER THERE ARE NO DIAGNOSES. And, yes, I am > > yelling. It > > > > makes me sick to realize what is being done to this community who > > have > > > > a chronic infection of one sort or another. > > > > > > > > Tony, move over, I want to join your camp. > > > > > > > > a > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 You won't know until you try it - the Zithromax. She can take it with food and low dose. See what your doctor thinks. a > > She is not eating any gluten. She is down to maybe a half dozen foods > she can tolerate, basically organic meat and greens. > > House is mold free, confirmed by recent tests. No carpeting, 100% > porcelain tile, threw half our personal possessions out. Everything > that can be done there, has definitely been done. In addition we live > in the Sonoran desert. > > She can and does drink organic milk and yogurt. > > Zithro ... by itself? Maybe ... the problem is that if it works, and > can be tolerated for any length of time, it is going to produce die off, > and she has to get rid of the toxins somehow. That is what has the > doctor stumped. Last September her autonomic nervous system went > bonkers -- all sorts of arrhythmias, BP fluctuation, loss of body temp > control ... presently she can't read, can't watch a video, listen to > music ... it's too much input. Overloads her. This is neurotoxicity. > I think this has to be dealt with somehow before we can add more toxins > into the mix. I assume that the MCS that's developed over the past 5 or > 6 years reflects the inability to keep bad stuff out, and to get rid of > it once it's in. > > Also as a practical matter, after 30 years of chronic illness, starting > with sudden-onset CFS, she is pretty much worn down to the nubbins. Not > much fight left. And this is going to be a hell of a fight. > > --Bob > > pjeanneus wrote: > > > > Bob, > > Yes, I think there is hope. But it may be like walking a tightrope. > > Mino can be the worst to start with. > > > > If she has food sensitivities how about trying a diet with no gluten? > > She may not need this forever - just until she is doing better. > > > > Can she tolerate dairy? I would suggest finding a whole milk yogurt > > such as Strauss organic European style. > > > > Then start her on Zithromax and see if she tolerates it well. If she > > does she can stay on it for a couple of years. During this time she > > may want to try minocycline again. Once her gut heals you may be > > surprised at what she can take that now makes her sick. > > > > Are you in a home with mold? Do you have any idea? She probably must > > get away from any source of mold at least until she begins to recover. > > > > Please reply to my ideas, because if they seem like they don't fit > > her picture I am sure someone on this list will have others!!!! > > > > a > > > > > > > > Well now some 8 to 10 years too late we have figured out that this > > might > > > be a useful band-wagon, too. The problem for my wife is that she > > is so > > > desperately ill with MCS on top of CFS, that she is reactive to > > almost > > > everything. For example, just 50 mg of mino causes her *violent* > > > stomach pain that takes weeks to blow over. We have a doctor who > > wants > > > to treat her for Lyme and myco, but feels like his hands are tied > > > because virtually everything he gives her makes her ill in other > > ways. > > > Even healthy people struggle with die-off toxins; my wife can > > scarcely > > > detox at all. > > > > > > Anyone else have this experience where their detox pathways are > > shot, no > > > elbow room for anything? Anyone know a way out? > > > > > > --Bob > > > > > > pjeanneus wrote: > > > > > > > > I think the problem we are up against is that even smart doctors > > like > > > > Cheney do only routine lab tests for various infections. In > > the > > > > mid 90s he and others looked at the mycoplasma issue. I know a > > surgeon > > > > from Knoxville who was Cheney's patient. He was one of the few who > > > > talked Cheney into trying a lot of antibiotics on him. > > Unfortunately > > > > for him and a lot of the rest of us this patient did not recover > > on > > > > antibiotics. > > > > > > > > I was treated by Dr. Flechas at this same time. He was > > involved > > > > with Aristo Vojdani in a research study. I tested positive by PCR > > for > > > > the mycoplasma, got antibiotics, knew I had to take them a couple > > of > > > > years at least and began to recover. If I had quit the > > antibiotics at > > > > the end of 4 months I would still be like the patients I saw for > > years > > > > at the Charlotte support groups - dragging in, walking with > > canes, in > > > > wheel chairs, spaced out, on various brain altering drugs trying > > > > desperately to keep going from one hour to the next. > > > > > > > > Did Cheney et al test their patients? Do they? Well, just to give > > you > > > > one clue - ask them what lab they use to test all their cfs and > > fms > > > > patients for borrelia. How much do you want to bet it is Quest or > > > > LabCorp. NO WONDER THERE ARE NO DIAGNOSES. And, yes, I am > > yelling. It > > > > makes me sick to realize what is being done to this community who > > have > > > > a chronic infection of one sort or another. > > > > > > > > Tony, move over, I want to join your camp. > > > > > > > > a > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 If you back channel me I will give you the name of a Dr. who has helped me with these symptoms. Marie --- Bob Grommes <bob@...> wrote: > Well now some 8 to 10 years too late we have figured > out that this might > be a useful band-wagon, too. The problem for my > wife is that she is so > desperately ill with MCS on top of CFS, that she is > reactive to almost > everything. For example, just 50 mg of mino causes > her *violent* > stomach pain that takes weeks to blow over. We have > a doctor who wants > to treat her for Lyme and myco, but feels like his > hands are tied > because virtually everything he gives her makes her > ill in other ways. > Even healthy people struggle with die-off toxins; my > wife can scarcely > detox at all. > > Anyone else have this experience where their detox > pathways are shot, no > elbow room for anything? Anyone know a way out? > > --Bob > > pjeanneus wrote: > > > > I think the problem we are up against is that even > smart doctors like > > Cheney do only routine lab tests for various > infections. In the > > mid 90s he and others looked at the mycoplasma > issue. I know a surgeon > > from Knoxville who was Cheney's patient. He was > one of the few who > > talked Cheney into trying a lot of antibiotics on > him. Unfortunately > > for him and a lot of the rest of us this patient > did not recover on > > antibiotics. > > > > I was treated by Dr. Flechas at this same > time. He was involved > > with Aristo Vojdani in a research study. I tested > positive by PCR for > > the mycoplasma, got antibiotics, knew I had to > take them a couple of > > years at least and began to recover. If I had quit > the antibiotics at > > the end of 4 months I would still be like the > patients I saw for years > > at the Charlotte support groups - dragging in, > walking with canes, in > > wheel chairs, spaced out, on various brain > altering drugs trying > > desperately to keep going from one hour to the > next. > > > > Did Cheney et al test their patients? Do they? > Well, just to give you > > one clue - ask them what lab they use to test all > their cfs and fms > > patients for borrelia. How much do you want to bet > it is Quest or > > LabCorp. NO WONDER THERE ARE NO DIAGNOSES. And, > yes, I am yelling. It > > makes me sick to realize what is being done to > this community who have > > a chronic infection of one sort or another. > > > > Tony, move over, I want to join your camp. > > > > a > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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