Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 Edy Rayfield wrote: > > Hello Penny and Nelly, I have to chime in here. I lurk about reading a lot of these posts and the truth for me is that you two are the ones that make the most sense and you do it elequently at that. > I, too, have been ill for over 30 years now. Really ill. Called it CFS for 28 years then tested at Igenex and now call it Lyme. What's in a name anyway? I tested many years ago with immunosciences and have antibodies to just about every pathegen there is, but can that mean active infection or that I've dealt with it. I tested pos for Hep B and then had some further testing done and found that it was non active and I simply had the antibodies. A mold panal revealed a heavy load. Peace, Edy Those of us in the Incline epidemic ALSO have different people testing positive for every damn weird thing in the book, and none of these have been the common denominator so far. Some are Lyme, others Myco, Most HHV6a, while CMV hits someone else. Interesting about the Gancyclovir, we tried that so many years ago that I can't even remember when it was. Huge pill, hard to swallow. Did nothing for any of us. But of ALL of the people I saw dropping like flies, there was one exposure that just well and truly kicked ass on everyone. It was this darn " black mold " . And there were no exceptions. So this " miracle " that I took a wild leap at was that, just as much as it made me hurt when I was around it - so I hoped that extreme avoidance would make me feel commensurately better. I'm not proposing that mold is the cause of CFS, I have no need for everybody to land on me like a ton of bricks, although they have done so, just because they mistakenly interpreted what I said as " believes that mold is the cause of everything " . This weird response to mold is what I saw. Avoidance is what I did, and a better lifestyle was the result. And now I have Dr Shoemakers science to back me up on this. I can't wait to find out if this " Cryptovirus " knocking out STAT 1 proteins is the ultimate disabler of the " underpinnings " that allows these various infections and susceptibilities. (some may recall my bridge-collapse analogy that I used to get people to forget about stupid " stress and stressors " ). So far, I've seen people improve a bit on ampligen and antibiotics, but it just wasn't as good as one would hope. I am doing neither, and have been able to control an amazing amount of pain, so until the cause is found, and the cure is whupping butt on this illness, I'll keep on doing what I'm doing: Extreme Mold Avoidance. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 Kathy J.F., Contact ACAM (American College for the Adancement of Medicine) and ask for a list of member physicians in your area, then make inquiries. Don't be timid; call the office and ask about the doctors credentials, experience, expertise. Using this technique I located a phycian, an MD with a PhD in biochemistry...who treats the cause, not the symptom. Also, you can contact the state licensing board and get a list of all the doctors and their credentials in the state. Good hunting. Mel Re: Re: Infections Penny, I did write to you back channel asking whether you knew of any doctors testing for the infections I expect I have. You didn't have an answer for me. It makes me crazy not knowing where to go for help or whether or not I'll be well enough to go for that help if it's a long distance from home. Your posts tend to put me in a state of despair. I am not lazy; I am sick. I appreciate your posts, but please temper your comments. You wrote: " This used to be routine, until money became more important than > patients. Now the only patients that get this care > routinely are > pets and farm animals. " I have often wished that I could be my daughter's dog. Many of us are doing the best we can. In many cases you are preaching to the choir. I cannot get any testing where I live. I no longer bring my doctors research painstakingly put together. They ignore it or get angry. After 16 years of this kind of treatment, what would you recommend I do? I'm listening, both ears wide open. I keep trying supplements but usually I'm unable to tolerate them. You caught me on a rough morning and your post put me over the top. Kathy J. F. ----- Original Message ----- From: " penny " <pennyhoule@...> >I find it disturbing that almost everyone still believes >that > infections are " secondary " to our illness. > > It's like saying the disease TB is secondary to people's > weak immune > systems. > > I'm accused of being vocal. But that's because it's hard > to get > people to listen. (and I wish those who do listen would > post here, > rather than writing me privately). > > I'm also very disturbed by people claiming that " there are > too many > infections to test for " . This is not only lazy, > misleading, > irritating and wrong, it's also, I believe, a great > disservice to > patients and can lead to great harm. The fact is, we don't > routinely > get tested for ANY infections. Especially the simple yet > obvious > (and cheap) ones like Staph, strep and pseudomonas. > > I know several microbiologists who can tell you exactly > how easy it > is to test and identify organisms. First you put the > sample in the > petri dish and watch to see what grows profusely. You'll > be able to > identify the culprit from that. No special techniques > needed. Then > you put some antimicrobial discs in the dish, and see > which ones > push the growth back. Then you treat with said > antimicrobials, then > you retest, adjust the drug and retreat until ALL > organisms and > symptoms are gone. Then, if symptoms are not completely > gone, you > can dig for stealthier organisms, but I bet you'll be > surprised at > how infrequently that will be necessary. > > This used to be routine, until money became more important > than > patients. Now the only patients that get this care > routinely are > pets and farm animals. > > penny > 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 June 1, 2006 Report Share Posted June 1, 2006 , is Shoemaker's book the reference I should go to first if I want to learn more about extreme mold avoidance, as you call it? what secondary references do you recommend? Thank you S On 6/1/06, erikmoldwarrior <erikmoldwarrior@...> wrote: > > Edy Rayfield wrote: > > > > Hello Penny and Nelly, I have to chime in here. I lurk about > reading a lot of these posts and the truth for me is that you two > are the ones that make the most sense and you do it elequently at > that. > > I, too, have been ill for over 30 years now. Really ill. > Called it CFS for 28 years then tested at Igenex and now call it > Lyme. What's in a name anyway? I tested many years ago with > immunosciences and have antibodies to just about every pathegen > there is, but can that mean active infection or that I've dealt with > it. I tested pos for Hep B and then had some further testing done > and found that it was non active and I simply had the antibodies. A > mold panal revealed a heavy load. > Peace, Edy > > Those of us in the Incline epidemic ALSO have different people > testing positive for every damn weird thing in the book, and none of > these have been the common denominator so far. > Some are Lyme, others Myco, Most HHV6a, while CMV hits someone else. > Interesting about the Gancyclovir, we tried that so many years ago > that I can't even remember when it was. Huge pill, hard to swallow. > Did nothing for any of us. > But of ALL of the people I saw dropping like flies, there was one > exposure that just well and truly kicked ass on everyone. > It was this darn " black mold " . And there were no exceptions. > So this " miracle " that I took a wild leap at was that, just as much > as it made me hurt when I was around it - so I hoped that extreme > avoidance would make me feel commensurately better. > I'm not proposing that mold is the cause of CFS, I have no need for > everybody to land on me like a ton of bricks, although they have > done so, just because they mistakenly interpreted what I said > as " believes that mold is the cause of everything " . > This weird response to mold is what I saw. Avoidance is what I did, > and a better lifestyle was the result. And now I have Dr Shoemakers > science to back me up on this. > I can't wait to find out if this " Cryptovirus " knocking out STAT 1 > proteins is the ultimate disabler of the " underpinnings " that allows > these various infections and susceptibilities. (some may recall my > bridge-collapse analogy that I used to get people to forget about > stupid " stress and stressors " ). > So far, I've seen people improve a bit on ampligen and antibiotics, > but it just wasn't as good as one would hope. I am doing neither, > and have been able to control an amazing amount of pain, so until > the cause is found, and the cure is whupping butt on this illness, > I'll keep on doing what I'm doing: Extreme Mold Avoidance. > - > > > > > > > > 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 June 1, 2006 Report Share Posted June 1, 2006 Whoops- this isn't the infection and inflammation list.. but hey my opinion is still the same regardless of the Label of the syndrome. Barb > I find it disturbing that almost everyone still believes that > infections are " secondary " to our illness. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 Kathy, perhaps someone else can help you. What part of the country/world do you live? I have rather lengthy lists of docs who look for infection, and I am on the same page as Penny - the causes of cfs and fms are infections. a pj7@... > > Penny, I did write to you back channel asking whether you > knew of any doctors testing for the infections I expect I > have. > > You didn't have an answer for me. It makes me crazy not > knowing where to go for help or whether or not I'll be well > enough to go for that help if it's a long distance from > home. > > Your posts tend to put me in a state of despair. I am not > lazy; I am sick. > > I appreciate your posts, but please temper your comments. > > You wrote: " This used to be routine, until money became more > important than > > patients. Now the only patients that get this care > > routinely are > > pets and farm animals. " > > I have often wished that I could be my daughter's dog. Many > of us are doing the best we can. In many cases you are > preaching to the choir. > > I cannot get any testing where I live. I no longer bring my > doctors research painstakingly put together. They ignore it > or get angry. After 16 years of this kind of treatment, > what would you recommend I do? I'm listening, both ears > wide open. > > I keep trying supplements but usually I'm unable to tolerate > them. You caught me on a rough morning and your post put me > over the top. > > Kathy J. F. > > > ----- Original Message ----- > From: " penny " <pennyhoule@...> > > > > >I find it disturbing that almost everyone still believes > >that > > infections are " secondary " to our illness. > > > > It's like saying the disease TB is secondary to people's > > weak immune > > systems. > > > > I'm accused of being vocal. But that's because it's hard > > to get > > people to listen. (and I wish those who do listen would > > post here, > > rather than writing me privately). > > > > I'm also very disturbed by people claiming that " there are > > too many > > infections to test for " . This is not only lazy, > > misleading, > > irritating and wrong, it's also, I believe, a great > > disservice to > > patients and can lead to great harm. The fact is, we don't > > routinely > > get tested for ANY infections. Especially the simple yet > > obvious > > (and cheap) ones like Staph, strep and pseudomonas. > > > > I know several microbiologists who can tell you exactly > > how easy it > > is to test and identify organisms. First you put the > > sample in the > > petri dish and watch to see what grows profusely. You'll > > be able to > > identify the culprit from that. No special techniques > > needed. Then > > you put some antimicrobial discs in the dish, and see > > which ones > > push the growth back. Then you treat with said > > antimicrobials, then > > you retest, adjust the drug and retreat until ALL > > organisms and > > symptoms are gone. Then, if symptoms are not completely > > gone, you > > can dig for stealthier organisms, but I bet you'll be > > surprised at > > how infrequently that will be necessary. > > > > This used to be routine, until money became more important > > than > > patients. Now the only patients that get this care > > routinely are > > pets and farm animals. > > > > penny > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 I simply don't get what the argument is about. This list looks at infection, and often. It's not the only thing it looks at, but how strange that people are thinking they're not heard. Very strange. > > > Hi Penny, > > I totally agree with you. I sent two emails in which I wrote about great > improvements....but nobody responded to it....feels like people all want to > invent the wheel themselves. > > I feel ignored and seriously consider unsubscribing....what's the point of > being on this list if communication is only a one way thing.... > > Chiara > > > _____ > > From: > [mailto: ] On Behalf Of Nelly Pointis > Sent: Thursday, June 01, 2006 11:18 AM > > Subject: Re: Re: Infections > > > Penny, > > >I'm accused of being vocal. But that's because it's hard to get > >people to listen. (and I wish those who do listen would post here, > >rather than writing me privately). > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 Chiara, I read this list on occasion. Are you saying you wrote about great improvements using antibiotics for infection? I also am doing great and still on antibiotics at times. But I suspect the reason many do not want to hear this is because they are so afraid to take longterm antibiotics. I have often ranted about how dangerous quinolones are. But that doesn't mean i don't push the use of antibiotics. So far that is all that I have found to work for these intracellular infections. And I don't see where anything cures them. a > > Hi Penny, > > I totally agree with you. I sent two emails in which I wrote about great > improvements....but nobody responded to it....feels like people all want to > invent the wheel themselves. > > I feel ignored and seriously consider unsubscribing....what's the point of > being on this list if communication is only a one way thing.... > > Chiara > > > _____ > > From: > [mailto: ] On Behalf Of Nelly Pointis > Sent: Thursday, June 01, 2006 11:18 AM > > Subject: Re: Re: Infections > > > Penny, > > >I'm accused of being vocal. But that's because it's hard to get > >people to listen. (and I wish those who do listen would post here, > >rather than writing me privately). > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 It's a bit like calling diabetes Chronic Thirst Syndrome. And I think I might disagree about the underlying cause. So what if it's not the infections. If treating the infections makes a person FEEL better then I'm all for it. Warm regards <simplicity46@...> wrote: Hi , Not everybody at this site has exactly the same point of view regarding infections, there are one or two very vocal members here with extreme views in my opinion. But many people here who have had the 'CFS' diagnosis slapped on them, have later found that they have tested positive for Lyme disease and other serious infections; so if you can bear with us a bit longer then these things should become more clear. Just a thought though, regarding your apparent understanding of the term 'CFS'. I dont know if you realise that this 'CFS' tag is NOT the name of any specific disease; it does not even indicate the same symptoms in each person! On the contrary; 'CFS' is a very wide and rather derogatory umbrella term. It has been carefully designed to trivialise and cover up quite a number of other illnesses, and was especially created to imply that their illness is psychological. All of this has been done in order that the patients real illness can legally remain undiagnosed, not to mention unresearched and untreated; this has its roots with a small association of unscrupulous politicians and corrupt psychiatrists who are reputed to have conflicting financial interests and for political reasons and in order to save our governments huge sums of money. I personally believe that many of these so called 'CFS' illnesses are occurring as a result of our exposure to environmental toxins; and the governments who have approved the use of the said environmental toxins are fully aware of this fact; and are doing their best to whitewash the whole thing, to avoid discovery and the huge compensation bill that would bring; by creating the biggest smoke screen imaginable. A 'Syndrome' is not even the name of an illness, it simply means a bunch of symptoms. There are eight CDC 'diagnostic' symptoms, and you only need four of those symptoms to qualify for your lucky 'CFS' lottery ticket; 'diagnosis'. This means that: A person who is suffering from: Depression, Headaches, unrefreshing sleep, sore throats and swollen glands, will be given the exact same phoney 'diagnosis' as someone who is suffering from: Severe multi-joint pain, muscle pain, thermal dysregulation, cognitive problems and post-exertional 'malaise'. (watch out for that neat and deceptive term 'malaise' that doctors use, too, because it most definitely does NOT indicate the 'payback' that we experience; which is a delayed reaction where you are bedridden for days at a time with debilitating flu-like symptoms and an increase in pain and cognitive problems as a result of minor activities. If you look up the term 'Post-exertional malaise' it actually means that the patient is feeling very slightly and vaguely off-colour as a result of very major physical exertion. If you stick around a bit longer and keep reading you will see what I am getting at; and you may get some good ideas as to how to help yourself; how to get a proper diagnosis and real treatment for what ever is really wrong with you. my very best wishes > > I do find it disturbing that some people are implying that treatment > of infections is the final goal of treatment for CFS, both necessary > and sufficient for a cure. We will from time to time have infections, > just like non-PWCs. We may even be predisposed to or more susceptible > to certain infections because of our CFS. and infections may cause > further matabolic or other problems and symptoms some of twhich may > oerlap with what are usually thought of a 'CFS' symptoms. But > treatment of the infections is pretty much just like treatment for > any other confounding, secondary or residual condition. We will still > have CFS (and the continuing susceptibility to more infections > possibly) when we are through with that. If we didn't, we wouldn't be > considered people with CFS in the first place. > 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 June 1, 2006 Report Share Posted June 1, 2006 Hi , One of the problems in this area is that there are too many infections too test for and many labs have poor methods. there is no way to tule out infectcions as being a facator in a persons illness. We all have infections. An ideal panel would include testing for: -Mycoplasma fermentans, M. penumoniae, M. hominis, M. penetrans -Chlamydia pneumoniae & chlamydia trachomatis -Lyme disease -HHV-6, variants A & B -CMV -EBV .... at the very least. There are many other infections which have been implemented in CFS. Many people with CFS also have unsuspected parasiti infections also. I personally believe that chronic infections are definitely one of the main facators in CFS, if not the main factor in the majority of cases. Best regards, Blake Infections I do find it disturbing that some people are implying that treatment of infections is the final goal of treatment for CFS, both necessary and sufficient for a cure. We will from time to time have infections, just like non-PWCs. We may even be predisposed to or more susceptible to certain infections because of our CFS. and infections may cause further matabolic or other problems and symptoms some of twhich may oerlap with what are usually thought of a 'CFS' symptoms. But treatment of the infections is pretty much just like treatment for any other confounding, secondary or residual condition. We will still have CFS (and the continuing susceptibility to more infections possibly) when we are through with that. If we didn't, we wouldn't be considered people with CFS in the first place. 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 June 1, 2006 Report Share Posted June 1, 2006 Hi Edy God, Yes I agree with you, I am a sufferer not a scientific expert and I certainly couldnt tell you what the underlying causes may be, but I totally agree whatever is helping people to feel better has got to be a very good thing indeed.. Regarding infections, genetics and toxins etc, there are lots of widely different ideas and opinions being expressed here; and quite rightly imo. It looks as though there are numerous likely causes being furiously shoved under the Health Departments carpet... if only they had the patients best interest at heart for once, they would be actively be seeking the truth instead of covering it up- but I guess thats just a naive point of view? New scientific evidence is coming to light every day and hopefully its only a matter of time before real treatments and real diagnoses become available. Meantime, speaking for myself, it all only looks like some fantasy land to me- because none of these helfpul tests and treaments being mentioned are likely to ever be within my reach during my lifetime. If only I could afford a doctor who was prepared to stick his neck out and do some proper tests just once and who could support me through any kind of treatment protocol at all- that would be a big plus living where I live! Still I have heard many different things since coming here and at least been able to make some minor positive adjustments that are within my budget. best wishes > > It's a bit like calling diabetes Chronic Thirst Syndrome. And I think I might disagree about the underlying cause. So what if it's not the infections. If treating the infections makes a person FEEL better then I'm all for it. Warm regards > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 > But many people here who have had the 'CFS' diagnosis slapped on them, have later found that they have tested positive for Lyme disease and other serious infections;< > Just a thought though, regarding your apparent understanding of the term 'CFS'. > I dont know if you realise that this 'CFS' tag is NOT the name of any specific disease; it does not even indicate the same symptoms in each person! > On the contrary; 'CFS' is a very wide and rather derogatory umbrella term. It has been carefully designed to trivialise and cover up quite a number of other illnesses, and was especially created to imply that their illness is psychological. > How many with a CFS diagnosis have tested positive for some pathogen that almost looks like it would be " good enough " to be causative for something like this? All of us! with all kinds of bugs - just like AIDS, yet they all fall just a little short. Perhaps for the same type of reason. Something deeper that doctors haven't been looking for. Lyme, when it broke out in Old Lyme, Connecticut looked like Juvenile Rheumatoid Arthritis. They say that Lyme has been found in Alzheimers, yet Alzheimers is not like CFS. Dunno what part Lyme plays in CFS, but it needs some work before it fits the facts. The fiendish part about CFS is that, Yes! it IS the name of a specific illness. It is the " name " that was directly slapped onto Incline Village " Yuppie Flu " Disease, and although it was designed at the outset to trivialize the illness by the CDC - CFS was associated with the real deal in the public's mind. The syndromic description was intended to induce doctors to look at people with these concurrent complaints in order to raise their suspicions that further testing was necessary to uncover the immunological abnormalities found by Dr Cheney and Dr . Instead, CFS was twisted by doctors into " CFS is characterized by fatigue, therefore CFS is nothing MORE than fatigue. If you have something MORE than fatigue, then it cannot be CFS " . Yet all the time, people still want to say " CFS " and think " Incline Village " . Twisting the word from its original meaning and then asserting that the old references must now conform to the new meaning is like listening to Gene Autry, the singing cowboy who sang " When it was fiesta, and we were so GAY, south of the border, down Mexico way " and saying " SEE? Gene must have been a closet case of " Brokeback Mountain " . It one wants to divorce " CFS " from it's original meaning and apply it to tiredeness in the way denialists have done their best to achieve, you'd have to completely forget that it was ever associated with Incline Village or with anyone who used its original meaning. That's kind of difficult to do, because you can look back over twenty years of people saying " CFS is LIVING HELL " , and when they said it - they weren't lying and they weren't wrong. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 Hi , I'm in my mid 50s now and have not got much hope that anything can be done to salvage what's left of my health. There's so much going on and some of the things may help some of the people out there, but it's the pharmaceutical companies that are going to be the winners in this one I'm afraid. For decades I've hoped for a miracle and frankly I'm getting worn down trying and trying to find an answer. I think a major " cause " is that we live in a polluted environment and some of us don't have the proper methylation pathways to keep healthy. In poorer countries they have their illnesses, but mostly from the environment outright.....parasites, worms, starvation, malaria. Ours is more insidious in that we've sort of created it ourselves through toxic substances surrounding us everywhere changing the terrain of our chemistry. Our bodies weren't meant for this kind of toxic load. Bubble boy syndrome is more like it. I wish better health for EVERYONE on this list and all the others as well. One thing you can say in all our favor is we get an A for effort to regain anything that will make life more bearable. Good Luck everyone!!!!! Edy <simplicity46@...> wrote: Hi Edy God, Yes I agree with you, I am a sufferer not a scientific expert and I certainly couldnt tell you what the underlying causes may be, but I totally agree whatever is helping people to feel better has got to be a very good thing indeed.. Regarding infections, genetics and toxins etc, there are lots of widely different ideas and opinions being expressed here; and quite rightly imo. It looks as though there are numerous likely causes being furiously shoved under the Health Departments carpet... if only they had the patients best interest at heart for once, they would be actively be seeking the truth instead of covering it up- but I guess thats just a naive point of view? New scientific evidence is coming to light every day and hopefully its only a matter of time before real treatments and real diagnoses become available. Meantime, speaking for myself, it all only looks like some fantasy land to me- because none of these helfpul tests and treaments being mentioned are likely to ever be within my reach during my lifetime. If only I could afford a doctor who was prepared to stick his neck out and do some proper tests just once and who could support me through any kind of treatment protocol at all- that would be a big plus living where I live! Still I have heard many different things since coming here and at least been able to make some minor positive adjustments that are within my budget. best wishes > > It's a bit like calling diabetes Chronic Thirst Syndrome. And I think I might disagree about the underlying cause. So what if it's not the infections. If treating the infections makes a person FEEL better then I'm all for it. Warm regards > 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 June 1, 2006 Report Share Posted June 1, 2006 Well said. erikmoldwarrior <erikmoldwarrior@...> wrote: > But many people here who have had the 'CFS' diagnosis slapped on them, have later found that they have tested positive for Lyme disease and other serious infections;< > Just a thought though, regarding your apparent understanding of the term 'CFS'. > I dont know if you realise that this 'CFS' tag is NOT the name of any specific disease; it does not even indicate the same symptoms in each person! > On the contrary; 'CFS' is a very wide and rather derogatory umbrella term. It has been carefully designed to trivialise and cover up quite a number of other illnesses, and was especially created to imply that their illness is psychological. > How many with a CFS diagnosis have tested positive for some pathogen that almost looks like it would be " good enough " to be causative for something like this? All of us! with all kinds of bugs - just like AIDS, yet they all fall just a little short. Perhaps for the same type of reason. Something deeper that doctors haven't been looking for. Lyme, when it broke out in Old Lyme, Connecticut looked like Juvenile Rheumatoid Arthritis. They say that Lyme has been found in Alzheimers, yet Alzheimers is not like CFS. Dunno what part Lyme plays in CFS, but it needs some work before it fits the facts. The fiendish part about CFS is that, Yes! it IS the name of a specific illness. It is the " name " that was directly slapped onto Incline Village " Yuppie Flu " Disease, and although it was designed at the outset to trivialize the illness by the CDC - CFS was associated with the real deal in the public's mind. The syndromic description was intended to induce doctors to look at people with these concurrent complaints in order to raise their suspicions that further testing was necessary to uncover the immunological abnormalities found by Dr Cheney and Dr . Instead, CFS was twisted by doctors into " CFS is characterized by fatigue, therefore CFS is nothing MORE than fatigue. If you have something MORE than fatigue, then it cannot be CFS " . Yet all the time, people still want to say " CFS " and think " Incline Village " . Twisting the word from its original meaning and then asserting that the old references must now conform to the new meaning is like listening to Gene Autry, the singing cowboy who sang " When it was fiesta, and we were so GAY, south of the border, down Mexico way " and saying " SEE? Gene must have been a closet case of " Brokeback Mountain " . It one wants to divorce " CFS " from it's original meaning and apply it to tiredeness in the way denialists have done their best to achieve, you'd have to completely forget that it was ever associated with Incline Village or with anyone who used its original meaning. That's kind of difficult to do, because you can look back over twenty years of people saying " CFS is LIVING HELL " , and when they said it - they weren't lying and they weren't wrong. - 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 June 1, 2006 Report Share Posted June 1, 2006 Do you think that's what folks are implying. I think we just want to feel better and get on with what life left we can salvage. Respectfully, Edy " H. Wish " <orchidwish@...> wrote: I do find it disturbing that some people are implying that treatment of infections is the final goal of treatment for CFS, both necessary and sufficient for a cure. We will from time to time have infections, just like non-PWCs. We may even be predisposed to or more susceptible to certain infections because of our CFS. and infections may cause further matabolic or other problems and symptoms some of twhich may oerlap with what are usually thought of a 'CFS' symptoms. But treatment of the infections is pretty much just like treatment for any other confounding, secondary or residual condition. We will still have CFS (and the continuing susceptibility to more infections possibly) when we are through with that. If we didn't, we wouldn't be considered people with CFS in the first place. 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 June 1, 2006 Report Share Posted June 1, 2006 Nelly, I'm glad that you have found helpful meds but I am obliged to warn others about the dangers of Larium...much like the dangers of levoquin. Details regarding the considerable risks can be found at http:www.indiana.edu/primate/lariam.html. Mel Re: Infections I find it disturbing that almost everyone still believes that infections are " secondary " to our illness. It's like saying the disease TB is secondary to people's weak immune systems. I'm accused of being vocal. But that's because it's hard to get people to listen. (and I wish those who do listen would post here, rather than writing me privately). I'm also very disturbed by people claiming that " there are too many infections to test for " . This is not only lazy, misleading, irritating and wrong, it's also, I believe, a great disservice to patients and can lead to great harm. The fact is, we don't routinely get tested for ANY infections. Especially the simple yet obvious (and cheap) ones like Staph, strep and pseudomonas. I know several microbiologists who can tell you exactly how easy it is to test and identify organisms. First you put the sample in the petri dish and watch to see what grows profusely. You'll be able to identify the culprit from that. No special techniques needed. Then you put some antimicrobial discs in the dish, and see which ones push the growth back. Then you treat with said antimicrobials, then you retest, adjust the drug and retreat until ALL organisms and symptoms are gone. Then, if symptoms are not completely gone, you can dig for stealthier organisms, but I bet you'll be surprised at how infrequently that will be necessary. This used to be routine, until money became more important than patients. Now the only patients that get this care routinely are pets and farm animals. penny > > I do find it disturbing that some people are implying that treatment > of infections is the final goal of treatment for CFS, both necessary > and sufficient for a cure. We will from time to time have infections, > just like non-PWCs. We may even be predisposed to or more susceptible > to certain infections because of our CFS. and infections may cause > further matabolic or other problems and symptoms some of twhich may > oerlap with what are usually thought of a 'CFS' symptoms. But > treatment of the infections is pretty much just like treatment for > any other confounding, secondary or residual condition. We will still > have CFS (and the continuing susceptibility to more infections > possibly) when we are through with that. If we didn't, we wouldn't be > considered people with CFS in the first place. > 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 June 1, 2006 Report Share Posted June 1, 2006 Ditto. in Champaign IL > > > > Chiara > > Don't feel alone in that. I've posted questions more than once without > getting a response, so you are not alone. > > mjh > > Date: Thu Jun 1, 2006 10:54 am (PDT) > From: " Chiara " molsbos@... > Subject: Re: Infections > > > > Hi Penny, > > I totally agree with you. I sent two emails in which I wrote about great > improvements....but nobody responded to it....feels like people all want to > invent the wheel themselves. > > I feel ignored and seriously consider unsubscribing....what's the point of > being on this list if communication is only a one way thing.... > > Chiara > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 On Jun 1, 2006, at 12:49 PM, Edy Rayfield wrote: > Do you think that's what folks are implying. I think we just want > to feel better and get on with what life left we can salvage. > Respectfully, Edy > > " H. Wish " <orchidwish@...> wrote: I do find it > disturbing that some people are implying that treatment > of infections is the final goal of treatment for CFS, both necessary > and sufficient for a cure. We will from time to time have infections, > just like non-PWCs. We may even be predisposed to or more susceptible > to certain infections because of our CFS. and infections may cause > further matabolic or other problems and symptoms some of twhich may > oerlap with what are usually thought of a 'CFS' symptoms. But > treatment of the infections is pretty much just like treatment for > any other confounding, secondary or residual condition. We will still > have CFS (and the continuing susceptibility to more infections > possibly) when we are through with that. If we didn't, we wouldn't be > considered people with CFS in the first place. Actually, there's a well-supported suspicion among researchers, doctors, and a lot of us here, that CFS is indeed triggered by one or more out of a wide range of possible infectious agents. In our case -- perhaps because of genetic predispostion, or environmental factors, or disrupted methylation, or (name your pet theory -- there are a lot of likely candidates) -- our bodies decide to respond to these infections by spiraling into the cascade of symptoms we now know as CFS. In other words: there are many different infections that offer entry points to the illness -- but, in the end, all of them create a disease process that ultimately leads to the same syndrome. (That's why they still haven't found a single causative agent after 25 years. It's increasingly likely that there is no ONE agent, but rather a group of agents that have the potential to trigger the immune system to create the same syndrome.) It also seems logical that the various subsets seen in CFS might be differentiated by the variety of triggering infections that are causing it. Under this model, tracking down the causal infection(s) and addressing it (them) as directly as may be possible does become a central piece of recovering health. If it turns out to be something that can be treated, and we treat it, we're cutting the core problem off at the knees and giving our bodies the best chance of recovery. It's a good working theory with some credible science and a lot of patient experience behind it. That's why so many people here are so focused on testing for and finding effective treatments for the core group. It's also why all the top-of-the-line CFS doctors in the world just automatically test for about a dozen of the most likely candidates (mycplasmas, CMV, Lyme, HHV-6, etc. etc.) on the first visit to their offices. Their own clinical experience, along with the research, have taught them that these infections play an important -- and possibly causative -- role; and identifying and resolving them (if possible) can create dramatic improvement in a very short time. It's one of the two or three best theories we have about how to pull this thing out at the roots. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 On Jun 1, 2006, at 1:00 PM, Katrina Tangen wrote: > Wastebasket diagnosis is something they dump people into when they > don't know where else to put them. CFS is often used this way--we > don't know what's wrong with you, so we'll dump you in with all > these other people that we don't know what to do with even though > you only have a few superficial things in common and probably don't > have the same thing wrong with you. Sort of categorizing rather > than diagnosing. I just looked at your message again; it means the > same thing basically as " umbrella term. " This has certainly been the historical case in the past. But, as the science has mounted (especially over the past 5-7 years), I don't think any serious doctor or researcher who's actually worked with ME/ CFS believes this any more. This is now a growing medical speciality with serious research money, peer-reviewed journals, conferences hither and yon, clinics everywhere, and a gathering consensus between doctors and patients about what's going on and what can be done. Which means that people are also getting a lot more careful about putting patients in our diagnosis pool for " wastebasket' reasons -- and a lot better at identifying those who belong somewhere else. Anyone who thinks this isn't a well-defined illness needs to spend some time with the Canadian Criteria. That's 114 peer-reviewed pages summarizing everything that's known about the specifics of the disease. This is the ME/CFS definition used by the Canadian health care system, and it's several light years beyond anything the CDC or any other Amercian or British agency has produced. " Wastebasket diagnosis " and the Fukuda requirements somebody else mentioned here in the last couple days are way out of date. We still encounter doctors who don't know how far things have progressed in the past decade -- but WE, at least, should know better. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 On Jun 1, 2006, at 4:57 PM, H. Wish wrote: > I've been ill longer than most of you, I dare say, I'm highly > educated and I have read more than average in my own quest to become > well. This is my opinion, and my opinion is that you can test 'til > you are 100 and take all the antibiotics made by man or nature and > many of us, if not you personally, will still have CFS. There are a lot of people on this list who have been sick a long time, and quite a few who have been " highly educated " all the way to the cutting edge of the subject. Such assertions aren't terribly impressive in this company. Your opinion appears to be strongly held. But the idea of underlying infections is well-accepted enough in CFS circles that I'm surprised you haven't already encountered it in your allegedly extensive research. And antibiotics may or may not be the answer to the underlying infections. That's not a question that can be answered until one knows what they are. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 Barb, Would it be possible for you to tell me where I can read that 16 page article you mentioned? I have c. pneumonia, asthma, allergies, and I just had a stress test and heart echo because of some heart related episodes I have had. Thank you! Dawn V Re: Infections Penny: I'm with you 100% on this. I just read recently a very good 16 page report about c.pneumonia & asthma, allergy and heart disease. SCIENCE NEWS just recently published findings that infection (and accumulated infection burden) over a lifetime primes the immunes system for all sorts of dysfunction. We know some virues can cause cancer... So I do not understand why anyone thinks infections are a 'secondary' to our illness... Infections ARE our illness (and infections can be from fungi, virus or bacteria.. or a combo of the three). IMO the autoimmune DISORDERS are secondary to INFECTION and INFLAMMATION.. isn't that why we named this list what we did? Barb Penny wrote: I find it disturbing that almost everyone still believes that infections are " secondary " to our illness. 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 June 2, 2006 Report Share Posted June 2, 2006 Just to be clear, that is the same point I was making. Trina Mercuria <mercuria@...> wrote: On Jun 1, 2006, at 1:00 PM, Katrina Tangen wrote: > Wastebasket diagnosis is something they dump people into when they > don't know where else to put them. CFS is often used this way--we > don't know what's wrong with you, so we'll dump you in with all > these other people that we don't know what to do with even though > you only have a few superficial things in common and probably don't > have the same thing wrong with you. Sort of categorizing rather > than diagnosing. I just looked at your message again; it means the > same thing basically as " umbrella term. " This has certainly been the historical case in the past. But, as the science has mounted (especially over the past 5-7 years), I don't think any serious doctor or researcher who's actually worked with ME/ CFS believes this any more. This is now a growing medical speciality with serious research money, peer-reviewed journals, conferences hither and yon, clinics everywhere, and a gathering consensus between doctors and patients about what's going on and what can be done. Which means that people are also getting a lot more careful about putting patients in our diagnosis pool for " wastebasket' reasons -- and a lot better at identifying those who belong somewhere else. Anyone who thinks this isn't a well-defined illness needs to spend some time with the Canadian Criteria. That's 114 peer-reviewed pages summarizing everything that's known about the specifics of the disease. This is the ME/CFS definition used by the Canadian health care system, and it's several light years beyond anything the CDC or any other Amercian or British agency has produced. " Wastebasket diagnosis " and the Fukuda requirements somebody else mentioned here in the last couple days are way out of date. We still encounter doctors who don't know how far things have progressed in the past decade -- but WE, at least, should know better. Sara 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 June 2, 2006 Report Share Posted June 2, 2006 Mel, Yes, Lariam can have some neuropsychiatric side effects, but in my experience the neuropsych effects I had from lariam was no worse (in fact milder) than the effects I had when taking atovaquone (Mepron in the US) which is another anti-protozoan that people with Babesia take. I took the atovaquone first when my infectious load was probably heavier, I took the Lariam after nearly 2 years of atovaquone and got psycho again (crying a lot and screaming at everybody mainly). I also got some amazing headaches, but I got ALL of the symptoms a) before treatment, b)with all anti-protozoan treatments (including doxy and artemisinin), c) they disappeared without discontinuation of the treatments. In fact the only thing i was never able to tolerate was the artemisinin. My hunch is that it's the bugs that cause the reaction when attacked and dying, rather than just a pure toxic/adverse reaction to the drug. Of course I have no proof of this, just my experience (my long experience!). I think a certain % of people who think they are healthy and who take Lariam as malarial prophylaxy are in fact harbouring bugs in their brains (walled off toxoplasmosis comes to mind for eg) and these bugs get disturbed by anti-malarial treatment, hence the % of people who go bananas on Lariam. BTW, the neuropsych effects are much easier to tolerate if you (think) you know what is going on, and if people around you know what to expect and if they don't agravate you, otherwise grrrrrrrrrrrr!! ) Nelly Re: Infections I find it disturbing that almost everyone still believes that infections are " secondary " to our illness. It's like saying the disease TB is secondary to people's weak immune systems. I'm accused of being vocal. But that's because it's hard to get people to listen. (and I wish those who do listen would post here, rather than writing me privately). I'm also very disturbed by people claiming that " there are too many infections to test for " . This is not only lazy, misleading, irritating and wrong, it's also, I believe, a great disservice to patients and can lead to great harm. The fact is, we don't routinely get tested for ANY infections. Especially the simple yet obvious (and cheap) ones like Staph, strep and pseudomonas. I know several microbiologists who can tell you exactly how easy it is to test and identify organisms. First you put the sample in the petri dish and watch to see what grows profusely. You'll be able to identify the culprit from that. No special techniques needed. Then you put some antimicrobial discs in the dish, and see which ones push the growth back. Then you treat with said antimicrobials, then you retest, adjust the drug and retreat until ALL organisms and symptoms are gone. Then, if symptoms are not completely gone, you can dig for stealthier organisms, but I bet you'll be surprised at how infrequently that will be necessary. This used to be routine, until money became more important than patients. Now the only patients that get this care routinely are pets and farm animals. penny > > I do find it disturbing that some people are implying that treatment > of infections is the final goal of treatment for CFS, both necessary > and sufficient for a cure. We will from time to time have infections, > just like non-PWCs. We may even be predisposed to or more susceptible > to certain infections because of our CFS. and infections may cause > further matabolic or other problems and symptoms some of twhich may > oerlap with what are usually thought of a 'CFS' symptoms. But > treatment of the infections is pretty much just like treatment for > any other confounding, secondary or residual condition. We will still > have CFS (and the continuing susceptibility to more infections > possibly) when we are through with that. If we didn't, we wouldn't be > considered people with CFS in the first place. > 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 June 2, 2006 Report Share Posted June 2, 2006 Interesting theory, Nelly. Glad you're posting again. How are you doing? > > > > I do find it disturbing that some people are implying that > treatment > > of infections is the final goal of treatment for CFS, both > necessary > > and sufficient for a cure. We will from time to time have > infections, > > just like non-PWCs. We may even be predisposed to or more > susceptible > > to certain infections because of our CFS. and infections may cause > > further matabolic or other problems and symptoms some of twhich > may > > oerlap with what are usually thought of a 'CFS' symptoms. But > > treatment of the infections is pretty much just like treatment for > > any other confounding, secondary or residual condition. We will > still > > have CFS (and the continuing susceptibility to more infections > > possibly) when we are through with that. If we didn't, we wouldn't > be > > considered people with CFS in the first place. > > > > > > > > > > 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 June 2, 2006 Report Share Posted June 2, 2006 Hi Jill, Well, I am on several abx INCLUDING an imidazole (currently doxy 100 mg + azythromycin 250 mg + tinidazole 1g) per day + Lariam 250 mg once a week, and I seem to be doing better, except for a weekly headache the day after my lariam day. But I have more energy, mental and physical, and what I find most encouraging is that I seem to have definitely " shedded " some of my really bad symptoms like the vertigo attacks, the Central Sleep Apnoae and the heart arrhythmia. I don't even seem to have any " heart quizziness " any longer, which I still did have a few months ago. But as you know, this has been achieved very, very gradually, on practically non-stop abx combos for several years. A lot of suffering both from the symptoms and from trying to treat the infections I suspect as being at the root of my illness. But I was so ill with what I think were life-threatening symptoms, that in my case, it was not a hard choice to make, regardless of the potential dangers of the treatments. I am absolutely sure that had I not treated myself agressively with abx combos, I would simply be no more. In fact i now wish I had treated myself earlier with abx rather than waiting until I was so ill I really thought I would die (and so did a few doctors I saw who never offered abx but strongly advised I would die if I continued to refuse a pacemaker). I realise not everybody is as ill as I was a few years ago, but I didn't think i was THAT sick either 10 years ago, and then it all went really fast downhill and I had no choice and abx were definitely the only way for me to go. Nelly Re: Infections Interesting theory, Nelly. Glad you're posting again. How are you doing? > > Mel, > > Yes, Lariam can have some neuropsychiatric side effects, but in my experience the neuropsych effects I had from lariam was no worse (in fact milder) than the effects I had when taking atovaquone (Mepron in the US) which is another anti-protozoan that people with Babesia take. I took the atovaquone first when my infectious load was probably heavier, I took the Lariam after nearly 2 years of atovaquone and got psycho again (crying a lot and screaming at everybody mainly). I also got some amazing headaches, but I got ALL of the symptoms a) before treatment, b)with all anti-protozoan treatments (including doxy and artemisinin), c) they disappeared without discontinuation of the treatments. In fact the only thing i was never able to tolerate was the artemisinin. > > My hunch is that it's the bugs that cause the reaction when attacked and dying, rather than just a pure toxic/adverse reaction to the drug. Of course I have no proof of this, just my experience (my long experience!). > > I think a certain % of people who think they are healthy and who take Lariam as malarial prophylaxy are in fact harbouring bugs in their brains (walled off toxoplasmosis comes to mind for eg) and these bugs get disturbed by anti-malarial treatment, hence the % of people who go bananas on Lariam. BTW, the neuropsych effects are much easier to tolerate if you (think) you know what is going on, and if people around you know what to expect and if they don't agravate you, otherwise grrrrrrrrrrrr!! ) > > Nelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2006 Report Share Posted June 2, 2006 Nelly, I have virtually the same symptoms as you and then some. Been near death on many occassions. Are you treating for Lyme? I'm new here so don't know your history. Best, Edy Nelly Pointis <janel@...> wrote: Hi Jill, Well, I am on several abx INCLUDING an imidazole (currently doxy 100 mg + azythromycin 250 mg + tinidazole 1g) per day + Lariam 250 mg once a week, and I seem to be doing better, except for a weekly headache the day after my lariam day. But I have more energy, mental and physical, and what I find most encouraging is that I seem to have definitely " shedded " some of my really bad symptoms like the vertigo attacks, the Central Sleep Apnoae and the heart arrhythmia. I don't even seem to have any " heart quizziness " any longer, which I still did have a few months ago. But as you know, this has been achieved very, very gradually, on practically non-stop abx combos for several years. A lot of suffering both from the symptoms and from trying to treat the infections I suspect as being at the root of my illness. But I was so ill with what I think were life-threatening symptoms, that in my case, it was not a hard choice to make, regardless of the potential dangers of the treatments. I am absolutely sure that had I not treated myself agressively with abx combos, I would simply be no more. In fact i now wish I had treated myself earlier with abx rather than waiting until I was so ill I really thought I would die (and so did a few doctors I saw who never offered abx but strongly advised I would die if I continued to refuse a pacemaker). I realise not everybody is as ill as I was a few years ago, but I didn't think i was THAT sick either 10 years ago, and then it all went really fast downhill and I had no choice and abx were definitely the only way for me to go. Nelly Re: Infections Interesting theory, Nelly. Glad you're posting again. How are you doing? > > Mel, > > Yes, Lariam can have some neuropsychiatric side effects, but in my experience the neuropsych effects I had from lariam was no worse (in fact milder) than the effects I had when taking atovaquone (Mepron in the US) which is another anti-protozoan that people with Babesia take. I took the atovaquone first when my infectious load was probably heavier, I took the Lariam after nearly 2 years of atovaquone and got psycho again (crying a lot and screaming at everybody mainly). I also got some amazing headaches, but I got ALL of the symptoms a) before treatment, b)with all anti-protozoan treatments (including doxy and artemisinin), c) they disappeared without discontinuation of the treatments. In fact the only thing i was never able to tolerate was the artemisinin. > > My hunch is that it's the bugs that cause the reaction when attacked and dying, rather than just a pure toxic/adverse reaction to the drug. Of course I have no proof of this, just my experience (my long experience!). > > I think a certain % of people who think they are healthy and who take Lariam as malarial prophylaxy are in fact harbouring bugs in their brains (walled off toxoplasmosis comes to mind for eg) and these bugs get disturbed by anti-malarial treatment, hence the % of people who go bananas on Lariam. BTW, the neuropsych effects are much easier to tolerate if you (think) you know what is going on, and if people around you know what to expect and if they don't agravate you, otherwise grrrrrrrrrrrr!! ) > > Nelly Quote Link to comment Share on other sites More sharing options...
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