Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 Rich Congratulations on your discovery that cfs and autism work very closely. It would be very exciting to hear this- but this is something that was disocovered by newcastle university early in there investigations of cfs, sinus bacteria, stool bacteria and urine metabolites. They started in 1989 telling people the toxins present in bacteria running rampant in the cfs/fibro group was also recoverable in the autistic group.'Incredable how bad bugs cause disease isn't it'. Unfortunately most are lead to believe that you don't have 'an infection' you have a 'genetic problem'- strange how the groups fell ill by the bus load when presented to these infectious agents.As a reseracher I would strongly advise that you should first establish (by YOURSELF) before you ever blab on about genetic defects and methylation 'how people fell over the edge'. If you want to do a bit of study on austism I would concentrate on the mothers having children when they are at a later stage in the reproductive cycle having established one or two quiet inflammation conditions caused by modern medical practises....I'm sure you could take many of the mothers of these autistic kids and find inflammation somewhere in there mouth and throat. tony > > Hi, all. > > Here is a message that I'm posting to several internet lists today: > > > > I have been researching chronic fatigue syndrome for over eight > years. As regular readers may recall, I had developed a hypothesis > for the pathogenesis of chronic fatigue syndrome that prominently > featured the depletion of glutathione, and I presented a poster > paper on it at the AACFS (now the IACFS) meeting in October, 2004, > in Madison, Wisconsin. This paper can be found at > > http://www.cfsresearch.org/cfs/research/treatment/15.htm > > Anecdotal experience of people in the internet > group and others who took my hypothesis seriously and acted upon it > suggested that while some were able to raise their glutathione > levels by various means and experienced benefit from doing so, > others were not able to do so. At the time of writing my poster > paper, I was aware of this, and I acknowledged in the conclusions of > the paper that there appeared to be things that were blocking the > raising of glutathione in CFS. At that time, I was not sure > specifically what they were. I also knew that there was evidence > for a genetic predisposition in CFS, but I did not know the details > of the genetic variations involved. > > Since then, I became aware of the work of S. Jill et al. in > autism (Am J Clin Nutr. 2004 Dec;80(6):1611-7). They found that > glutathione was also depleted in autistic children, that this > resulted from a partial block in the methylation (also called > methionine) cycle, that this partial block resulted in part from > genetic variations in the genes for certain enzymes and proteins > associated with the sulfur metabolism (I don't think the genetic > part is published yet), and that it interfered with the conversion > of methionine to cysteine, which is the rate-limiting amino acid for > the synthesis of glutathione. They found that by using certain > supplements they could lift the block in the methylation cycle and > restore the glutathione level. > > In response to learning of this work, I became very interested in > possible parallels between chronic fatigue syndrome and autism. I > went on to attend the conference of the Defeat Autism Now! project > in Long Beach, California in October, 2005. As a result of this > experience, I became convinced that the genetic predisposition found > in autism must be the same or similar to that in a major subset of > chronic fatigue syndrome, and that the resulting biochemical > abnormalities were also the same or similar. As far as I know, the > genetic variations in people with CFS have not yet been studied in > detail or published, but I am optimistic that this will occur soon, > because of the rapid advances in the technology for doing so, and > the current active interest of at least three groups in the U.S. and > the U.K. in genomic aspects of CFS. > > There are obviously also major differences between chronic fatigue > syndrome and autism. I believe that these result primarily from the > different ages of onset. Autistic children experience onset early > in life, before their brains are fully developed. I believe that > this gives rise to the very different brain-related symptoms seen in > autistic children from those seen in adults with CFS. However, > there are many similarities in the symptomatology and the > biochemistry of these two disorders as well, including oxidative > stress, buildup of toxins, immune response shift to Th2, and gut > problems, for examples. > > The triggering factors for autism and chronic fatigue syndrome are > also largely different. There appears to be substantial evidence > now that vaccinations (containing either a mercury-based > preservative or live viruses, many given at the same time) were > responsible for triggering many of the cases of autism in > genetically-susceptible children. In CFS, a variety of triggering > factors (physical, chemical, biological, or psychological/emotional) > have been shown to be involved in various cases. All of these > factors have in common the tendency to deplete glutathione. It > appears that once glutathione drops sufficiently in a genetically > susceptible person, the methylation cycle goes down, and the result > is a depletion of several important metabolites in the sulfur > metabolism, including S-adenosylmethionine (SAMe), cysteine, > glutathione, taurine and sulfate. The depletion in these > metabolites causes an avalanche of pathogenesis, since they all have > very important functions in the body, and I think that much of this > pathogenesis is common between autism and CFS. In autism, I think > the loss of methylation capacity because of the drop in SAMe is > responsible for much of the interference with normal brain > development. > > I think that the reason why the people who have developed CFS as > adults did not develop autism as children (even though I suspect > that they have the same or similar genetic predisposition) is that > when they were children, not as many vaccinations were required. > The schedule of vaccinations required for children in the U.S. has > grown substantially in the past two or three decades, as has the > incidence of autism. I think this is also true in the U.K. > > My main message is that a great deal has already been worked out in > autism by the people in the Defeat Autism Now! project, and that I > believe that the CFS community would benefit greatly by looking > carefully at what they have already done. They have found > supplements that will compensate for the genetic variations and > correct these biochemical irregularities. They are also detoxing > heavy metals. The results in many autistic children have been > astounding. > > So I want to encourage everyone who has an interest in CFS to look > at the results of the DAN! project in autism. You can view videos > of the talks given at the latest two DAN! conferences on the > internet at no cost (unless you are paying for the internet time!). > Go to this site: > > http://www.danwebcast.com > > You can choose either the later Long Beach conference or the earlier > Boston conference. They cover much of the same material, but both > are worthwhile to watch. If you want to see a good explanation of > the methylation cycle research, go to the Boston meeting first, so > you will be able to view the talk by Jill , who did not attend > the Long Beach meeting. > > After selecting one of the conferences, go to the lower left and > register. This is free. They will email a password to you right > away, and then you can choose a talk to watch. > > Beyond this, I also want to recommend a book. This is a new book > (Sept. 2005). It is by Jon Pangborn, Ph.D. and Sydney Baker, M.D., > a biochemist and an autism clinician, respectively. It is available > on Amazon for people within the U.S. For people outside the U.S., > it can be obtained from the following website by means of PayPal: > > http://www.autismresearchinstitute.com > > The cost for the book is $30 U.S. > > This is an excellent book. It is a reference book, full of good > information and good science, explained clearly. This book deals > very practically with developing a treatment program for an > individual child. I think that most of it will turn out to apply > directly to adults with CFS as well. > > Although I have been suggesting consideration of the DAN! treatments > to people with CFS for only about two months, and it is too soon to > draw conclusions, early feedback is very encouraging. While I am > going out on a limb in announcing this on Co-Cure now, I don't want > to wait any longer, because I think this could help a lot of > people. Of course, we should all keep in mind that with the current > case definition of CFS we have a very heterogeneous population, and > the DAN! treatments may not help all PWCs, but I am convinced that > they will help a substantial subset. So I want to encourage you to > look into this in the strongest way I can. It could be the answer > for many of you. > > Rich Van Konynenburg, Ph.D. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 Hi, Tony. Well, it's great to see that you survived the holidays. I was beginning to wonder if you were still kicking! Happy New Year! I figured that if you were still alive, this post would rattle your cage enough that I would get a rise out of you! How did I know that? I'm familiar with the Newcastle guys, having shaken hands with a couple of them at the Seattle meeting of the AACFS a few years ago, and I do have a collection of their papers. (By the way, are you aware that a British group has published a couple of papers this past year arguing that they didn't do their chromatography correctly and that some of their results are not reliable?) I realize that you view the bacteria as the first cause in just about all illnesses, but please consider for a moment that it may be that the reason these ubiquitous bugs are able to get a foothold in some people and not others may be that there are differences in the operation of their immune systems, and that these differences just might have a genetic basis. It's true that I use data produced from the work of other scientists (citing them when I do). There is always a risk in relying on secondhand information (as I found in relying upon some of the Newcastle results), but that's what the whole progress of science is based upon. I'm not able to personally repeat all the experimental and observational work that is needed to understand CFS. What I do try to do is to check for consistency with accepted science and coherence within the work itself, and of course, replication of data by more than one group, when that's possible. In the case of genetic variations in autism, there is a pretty good body of evidence from different groups now that these are present at levels statistically significantly different from those in healthy normals, so I accept that as fact, especially since the genetic differences are consistent with the measured differences in biochemistry. The fact that the biochemical differences are consistent with the symptoms argues for the relevance of the genetics. What I'm saying is that the whole picture fits together well. I certainly don't deny that infections and inflammation play roles in both autism and CFS. In CFS, an infection is often the final challenge, bringing about the first features of the onset that are noticed by the patient. However, I think a lot has gone on behind the scenes before this happens, to set the person up for a fall. Normal people fight off infections all the time. Why don't these particular people succeed in doing so at that particular time? There has to be something going on with their immune systems prior to the onset. Furthermore, unless we fix that, we can pump antibiotics into them until the cows come home, but they won't be well until the immune system is in shape to pick up the ball. Oh, and I'm aware that this group is focused on infections and inflammation. If you read my post carefully, you will see that it is ON TOPIC here, because I mentioned that in CFS there are a variety of triggering factors, including BIOLOGICAL ones. There it is--infections are biological triggering factors! Well, somehow I doubt that my words here have won you over to my point of view, Tony, but I guess that's what makes the world go 'round! Again, I hope you are having a happy and productive new year. Best regards, Rich > > Rich > Congratulations on your discovery that cfs and autism work very > closely. It would be very exciting to hear this- but this is > something that was disocovered by newcastle university early in > there investigations of cfs, sinus bacteria, stool bacteria and > urine metabolites. > They started in 1989 telling people the toxins present in bacteria > running rampant in the cfs/fibro group was also recoverable in the > autistic group.'Incredable how bad bugs cause disease isn't it'. > Unfortunately most are lead to believe that you don't have 'an > infection' you have a 'genetic problem'- strange how the groups fell > ill by the bus load when presented to these infectious agents.As a > reseracher I would strongly advise that you should first establish > (by YOURSELF) before you ever blab on about genetic defects and > methylation 'how people fell over the edge'. > If you want to do a bit of study on austism I would concentrate on > the mothers having children when they are at a later stage in the > reproductive cycle having established one or two quiet inflammation > conditions caused by modern medical practises....I'm sure you could > take many of the mothers of these autistic kids and find > inflammation somewhere in there mouth and throat. > tony Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 Rich Your words and experiences are valid common medical scientific experiences. unfortunately this new way of doing things guarantee's the jobs for the boys, yet!!!! provides nothing for the patient.In today's way of running medicine an ilness like tuberculosis coming on the scene for the first time would take 20 years to get approved as legitimate and then possably another 20 years to show the processes of destruction on the body. I also see a lot of what you do as someone commenting on a californian earthquake from florida.If I get phoned by someone I'll drive hours across town because observing, discussing the hows and why's of there ilness and studying there bacteria- throat, sinus, blood and urine is so much more exciting than giving me literature to read by the same people that have no idea what is wrong with US... Do you form a solid opinion what goes wrong with people by studying the people or do you rely on the literature? you seem to lap up that we have genetic defects, which is just nauseus for me to read time and again.. Try an innocent look at the people carrying sinus problems and there fall into FATIGUE ILNESS, these people are just honestly telling there sinus stories on the net, they have no idea cfs is what they are getting into.Sinus disease tied in with cfs- wouldn't that be a first.... > > > > Rich > > Congratulations on your discovery that cfs and autism work very > > closely. It would be very exciting to hear this- but this is > > something that was disocovered by newcastle university early in > > there investigations of cfs, sinus bacteria, stool bacteria and > > urine metabolites. > > They started in 1989 telling people the toxins present in bacteria > > running rampant in the cfs/fibro group was also recoverable in the > > autistic group.'Incredable how bad bugs cause disease isn't it'. > > Unfortunately most are lead to believe that you don't have 'an > > infection' you have a 'genetic problem'- strange how the groups > fell > > ill by the bus load when presented to these infectious agents.As a > > reseracher I would strongly advise that you should first > establish > > (by YOURSELF) before you ever blab on about genetic defects and > > methylation 'how people fell over the edge'. > > If you want to do a bit of study on austism I would concentrate on > > the mothers having children when they are at a later stage in the > > reproductive cycle having established one or two quiet > inflammation > > conditions caused by modern medical practises....I'm sure you > could > > take many of the mothers of these autistic kids and find > > inflammation somewhere in there mouth and throat. > > tony > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 Aw, come on Tony. Give Rich a little credit. He's taking information from different sources and linking it together. Something clinicians often don't have time to do. My doctor who supposedly treats CFS and Environmental Sensitivities doesn't even bother to look at this stuff. Somebody needs to. There are lots of us taking gobs of antibiotics and getting nowhere fast, so why not look for other factors slowing down recovery? Rich isn't saying wait 20 years until I figure this out, he's saying there may be things we can try now. I appreciate what both Rich and Tony do. - Kate On Sunday, January 8, 2006, at 03:50 AM, dumbaussie2000 wrote: > Rich > Your words and experiences are valid common medical scientific > experiences. unfortunately this new way of doing things guarantee's > the jobs for the boys, yet!!!! provides nothing for the patient.In > today's way of running medicine an ilness like tuberculosis coming > on the scene for the first time would take 20 years to get approved > as legitimate and then possably another 20 years to show the > processes of destruction on the body. I also see a lot of what you > do as someone commenting on a californian earthquake from > florida.If I get phoned by someone I'll drive hours across town > because observing, discussing the hows and why's of there ilness and > studying there bacteria- throat, sinus, blood and urine is so much > more exciting than giving me literature to read by the same people > that have no idea what is wrong with US... Do you form a solid > opinion what goes wrong with people by studying the people or do you > rely on the literature? you seem to lap up that we have genetic > defects, which is just nauseus for me to read time and again.. > Try an innocent look at the people carrying sinus problems and there > fall into FATIGUE ILNESS, these people are just honestly telling > there sinus stories on the net, they have no idea cfs is what they > are getting into.Sinus disease tied in with cfs- wouldn't that be a > first.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 Dear All Dr Goldberg is successfully treating autistic kids and their parents NOW!! Regards Windsor Re: [infections] Re: CFS and autism Aw, come on Tony. Give Rich a little credit. He's taking information from different sources and linking it together. Something clinicians often don't have time to do. My doctor who supposedly treats CFS and Environmental Sensitivities doesn't even bother to look at this stuff. Somebody needs to.There are lots of us taking gobs of antibiotics and getting nowhere fast, so why not look for other factors slowing down recovery? Rich isn't saying wait 20 years until I figure this out, he's saying there may be things we can try now.I appreciate what both Rich and Tony do.- KateOn Sunday, January 8, 2006, at 03:50 AM, dumbaussie2000 wrote: RichYour words and experiences are valid common medical scientific experiences. unfortunately this new way of doing things guarantee'sthe jobs for the boys, yet!!!! provides nothing for the patient.Intoday's way of running medicine an ilness like tuberculosis comingon the scene for the first time would take 20 years to get approvedas legitimate and then possably another 20 years to show theprocesses of destruction on the body. I also see a lot of what youdo as someone commenting on a californian earthquake fromflorida.If I get phoned by someone I'll drive hours across townbecause observing, discussing the hows and why's of there ilness andstudying there bacteria- throat, sinus, blood and urine is so muchmore exciting than giving me literature to read by the same peoplethat have no idea what is wrong with US... Do you form a solidopinion what goes wrong with people by studying the people or do yourely on the literature? you seem to lap up that we have geneticdefects, which is just nauseus for me to read time and again..Try an innocent look at the people carrying sinus problems and therefall into FATIGUE ILNESS, these people are just honestly tellingthere sinus stories on the net, they have no idea cfs is what theyare getting into.Sinus disease tied in with cfs- wouldn't that be afirst.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Hi, Tony. Thanks for the response. I think you make some good points. I certainly have no quarrel with the importance of hands-on observation in microbiology or any other field of science. Lest you think I'm just a blue-sky theorist, I was an experimentalist for about 40 years, and did a good number of all-nighters in the lab watching experiments during that time. However, the fact is that both theory and experiment or observation have important roles to play. In the history of science, it wasn't until people figured out that you have to use both theory and experiment or observation together, and adjust theories until they match valid experiments or observations, that real progress began to be made. Now they call that the " scientific method. " I think you are doing some great things hands-on, from the sound of it. However, I dare say that you are also using a body of theory that you have in your head, while you do that. I think you have said that you frequently use a microscope. If so, that certainly was designed using the theory of optics. For a long time, biological science mainly consisted of information- gathering and descriptive work, and it involved largely hands-on research. But in the last few years there has been enough understanding developed that there is now a large body of theory to work with. Under these circumstances, it is much more possible to put forward detailed hypotheses in the biological sciences than it was in the past, and there is a much larger role being played by theorists than in the past. This is similar to what happened in the physical sciences much earlier, probably because they were able to start with much simpler systems than, say, the human body. Now, of course, when it comes to applying all this to an individual person, there is no substitute for getting information about that specific person. Some of this invariably needs to be obtained by lab work. A lot can be learned also from history and symptoms. If one puts all of that together with known theory, and looks at the whole problem using a systems analysis approach, I think it's possible to go a lot farther toward figuring out how to help the person than by relying on only one of these aspects, especially in complex cases, as many CFS cases are. In the cases of CFS I most frequently hear about, the people have already visited numerous doctors and had numerous physical exams and lab tests run. In that case, it's possible to take advantage of all the hands-on work that others have done, and apply theory to it in a systems approach, which in many cases has not been done, I think primarily because doctors are not trained to do that and because the system (at least in this country) does not allow enough time to be spent on one patient to do that. When I do that, I am not denying the importance of hands-on work. In fact, unless that work has been done, it isn't possible to apply theory with any precision to a specific case, because of biochemical individuality. I actually don't think we're all that far apart, Tony, and I wish you well in your efforts to help people. Rich > > > > > > Rich > > > Congratulations on your discovery that cfs and autism work very > > > closely. It would be very exciting to hear this- but this is > > > something that was disocovered by newcastle university early in > > > there investigations of cfs, sinus bacteria, stool bacteria and > > > urine metabolites. > > > They started in 1989 telling people the toxins present in > bacteria > > > running rampant in the cfs/fibro group was also recoverable in > the > > > autistic group.'Incredable how bad bugs cause disease isn't it'. > > > Unfortunately most are lead to believe that you don't have 'an > > > infection' you have a 'genetic problem'- strange how the groups > > fell > > > ill by the bus load when presented to these infectious agents.As > a > > > reseracher I would strongly advise that you should first > > establish > > > (by YOURSELF) before you ever blab on about genetic defects and > > > methylation 'how people fell over the edge'. > > > If you want to do a bit of study on austism I would concentrate > on > > > the mothers having children when they are at a later stage in > the > > > reproductive cycle having established one or two quiet > > inflammation > > > conditions caused by modern medical practises....I'm sure you > > could > > > take many of the mothers of these autistic kids and find > > > inflammation somewhere in there mouth and throat. > > > tony > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Rich, Here's food for thought from my personal experience. I developed sinus disease after " routine " sinus surgery to " open things up a little " . ENT after ENT, culture after culture " proved " I was not sick. Within six months I had CFS, swollen sinuses, tmj, uveitis and intermittent conjunctivitis. The CFS was the debilitating kind, as in " I don't want to move because I don't have the energy, and if I move too fast I get dizzy and instantly start sweating " . I am a weightlifter and runner, so I know I shouldn't start sweating in a 68F atmosphere. My current doctor diagnosed me with mycoplasma. Every other doctor I mentioned the " M " word to thought I was nuts, and some even chuckled at the notion. Two years of antibiotics and I am still improving. My wife got CFS about a year after I did, but without sinus disease. She had the same tests ran that finally gave me a diagnosis. She was negative. A few months later her sinuses bothered her and her doctor prscribed two weeks of telithromycin. After she finished the abx (sinuses were better), I suggested she be retested, as I figured the possibility that she had some degree of immune reaction. This time she was positive for mycoplasma with igg of 1100. Perhaps there is more to the " stealth pathogen " cause for CFS than the mainstream medical community cares to see. Or maybe they just don't know what they are looking for. I have an excellent CFS doctor that happens to believe there is an organic cause to CFS. This doctor has been working with CFS patients for many, many years. Doctor Gabe Mirken believes there are pathogens causing CFS that have yet to be discovered. I am thankful for exceptionally intelligent people like you who are eager to crack the mystery here. I hope something I said helps you if even in the smallest way. > > > > > > > > Rich > > > > Congratulations on your discovery that cfs and autism work > very > > > > closely. It would be very exciting to hear this- but this is > > > > something that was disocovered by newcastle university early > in > > > > there investigations of cfs, sinus bacteria, stool bacteria > and > > > > urine metabolites. > > > > They started in 1989 telling people the toxins present in > > bacteria > > > > running rampant in the cfs/fibro group was also recoverable in > > the > > > > autistic group.'Incredable how bad bugs cause disease isn't > it'. > > > > Unfortunately most are lead to believe that you don't have 'an > > > > infection' you have a 'genetic problem'- strange how the > groups > > > fell > > > > ill by the bus load when presented to these infectious > agents.As > > a > > > > reseracher I would strongly advise that you should first > > > establish > > > > (by YOURSELF) before you ever blab on about genetic defects > and > > > > methylation 'how people fell over the edge'. > > > > If you want to do a bit of study on austism I would > concentrate > > on > > > > the mothers having children when they are at a later stage in > > the > > > > reproductive cycle having established one or two quiet > > > inflammation > > > > conditions caused by modern medical practises....I'm sure you > > > could > > > > take many of the mothers of these autistic kids and find > > > > inflammation somewhere in there mouth and throat. > > > > tony > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 Kate I don't mind rich- I actually enjoy his enthusiasm. What I get funny about is how things are documented and portrayed. on tv yesterday for egs somone explained there cfs experience. I went to bed woke up 2 hours later and felt like a truck hit me, I then felt like I had acid running thru my veins. This is someone in australia that was a leading journalist that got struck down with cfs about 7 years ago.Now the medical literature- regardless of how well and by whom it's written doesn't tell it like this, it's more ...something... psychobabble... that goes away eventually.There's nothing in the literature that explains the acid running thru the veins, the toxic gas cloud that seems to engulf your head and eyeballs. The other observation that rich a non sufferer doesn't get to make is how you urine looks like your shreading your bladder every time you urinate, or if your a smarter than average sufferer your blood looks like it's full of shit not the nice claret colour of a healthy persons. My other gripe is regardless of how well presented his papers are or anyone before him present there papers, people that are given healthy financial positions in the medical establishment ain't going to jeapordise themselves by changing anything.Your virtually not going to get a shift of thinking. it was painfully obvious with helicobacter causing ulcers. they also treated legionaires disease with electric shock therapy in the same era (late seventies early eighteis) before they discovered the flu like condition that made people ill from air conditioning systems was a bacteria. The next thing rich may tie together is that bipolar goes hand in hand with this ilness as does autism.Many ilnesses overlap, pain levels and the position of hurt make a huge diagnostic shift often. I just feel that if I had 100 mothers with autistic children at a meeting " " " " " " MY FIRST PASSION " " " " " would be to get the facts from the horses mouth.......... how they fell ill.where they perfect one week then the week following there immunizations they changed???????? I would love to have a look at the impact this toxic ilness has on there blood counts, 3 and 5 year olds are more likeley to run pristine counts that only a toxic exposure can shift and I'm sure there would be heaps of there counts showing that they are being attacked by toxins in the bloodstream.I would guarantee that if you had 1000's of participants (there healthy brothers and sisters) that you'd notice these shifts away from what is normal and average. The first thing I ask anyone with cfs on the phone is do you sweat properly.I also find theres consequences that stick out like dog's b...ls of suffering pain and agony. one lady I visited just had here spine manipulated and the scar tissue around the spinal column was INCREDABLE according to her physio. The other thing is the heart- I alway's ask do you often go 80/50 90/50 in your blood pressure(heart disease -infection). I was lucky I only had a few that registered low 90/50 on a couple of occasions my biggy though was the tachycardia 100 to 120 for the whole year until I nailed it now it's 60 or 70 and my BP is 120 to 140 over 80.I think rich needs to hold someones hand with cfs and spend the day instead of hypothesising. And he may want to understand that he needs to conquer the whole gammit of medical ilness before he can take out cfs.Cfs starts with the heart and vascular system and you need them working properly before you can do anything. more later > > > Rich > > Your words and experiences are valid common medical scientific > > experiences. unfortunately this new way of doing things guarantee's > > the jobs for the boys, yet!!!! provides nothing for the patient.In > > today's way of running medicine an ilness like tuberculosis coming > > on the scene for the first time would take 20 years to get approved > > as legitimate and then possably another 20 years to show the > > processes of destruction on the body. I also see a lot of what you > > do as someone commenting on a californian earthquake from > > florida.If I get phoned by someone I'll drive hours across town > > because observing, discussing the hows and why's of there ilness and > > studying there bacteria- throat, sinus, blood and urine is so much > > more exciting than giving me literature to read by the same people > > that have no idea what is wrong with US... Do you form a solid > > opinion what goes wrong with people by studying the people or do you > > rely on the literature? you seem to lap up that we have genetic > > defects, which is just nauseus for me to read time and again.. > > Try an innocent look at the people carrying sinus problems and there > > fall into FATIGUE ILNESS, these people are just honestly telling > > there sinus stories on the net, they have no idea cfs is what they > > are getting into.Sinus disease tied in with cfs- wouldn't that be a > > first.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 Tony, I hear you. I just had the worst doctor appointment in my life. My doctor told me I'm making my son sick and what we need to do is have a positive attitude and get exercise etc. All the BS, but this is after years of telling him symptoms and handing him literature. It's like he hasn't heard a damn thing. - Kate D. On Wednesday, January 11, 2006, at 08:26 AM, dumbaussie2000 wrote: > somone explained there cfs experience. I went to bed woke > up 2 hours later and felt like a truck hit me, I then felt like I > had acid running thru my veins. This is someone in australia that > was a leading journalist that got struck down with cfs about 7 years > ago.Now the medical literature- regardless of how well and by whom > it's written doesn't tell it like this, it's more ...something... > psychobabble... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 I'm very interested in what you are saying. I have tachycardia. What's causing it? What can I do about it? What's worked for you? I have a lot of neurological symptoms ( at least I think they are neuro)--foggy head, anxiety, depression, light-headed, MCS). These are often the most uncomfortable of all symptoms for me. In addition to the fatigue/weakness. Should I see a neuro? I don't expect a neuro to be able to tell me much. Oh, I also have sleep apnea. Could that be related to this somehow? Thanks. Ann -----Original Message-----From: infections [mailto:infections ]On Behalf Of dumbaussie2000Sent: Wednesday, January 11, 2006 7:27 AMinfections Subject: [infections] Re: CFS and autismKateI don't mind rich- I actually enjoy his enthusiasm. What I get funny about is how things are documented and portrayed. on tv yesterday for egs somone explained there cfs experience. I went to bed woke up 2 hours later and felt like a truck hit me, I then felt like I had acid running thru my veins. This is someone in australia that was a leading journalist that got struck down with cfs about 7 years ago.Now the medical literature- regardless of how well and by whom it's written doesn't tell it like this, it's more ...something... psychobabble... that goes away eventually.There's nothing in the literature that explains the acid running thru the veins, the toxic gas cloud that seems to engulf your head and eyeballs. The other observation that rich a non sufferer doesn't get to make is how you urine looks like your shreading your bladder every time you urinate, or if your a smarter than average sufferer your blood looks like it's full of shit not the nice claret colour of a healthy persons.My other gripe is regardless of how well presented his papers are or anyone before him present there papers, people that are given healthy financial positions in the medical establishment ain't going to jeapordise themselves by changing anything.Your virtually not going to get a shift of thinking. it was painfully obvious with helicobacter causing ulcers. they also treated legionaires disease with electric shock therapy in the same era (late seventies early eighteis) before they discovered the flu like condition that made people ill from air conditioning systems was a bacteria.The next thing rich may tie together is that bipolar goes hand in hand with this ilness as does autism.Many ilnesses overlap, pain levels and the position of hurt make a huge diagnostic shift often.I just feel that if I had 100 mothers with autistic children at a meeting """"""MY FIRST PASSION""""" would be to get the facts from the horses mouth.......... how they fell ill.where they perfect one week then the week following there immunizations they changed????????I would love to have a look at the impact this toxic ilness has on there blood counts, 3 and 5 year olds are more likeley to run pristine counts that only a toxic exposure can shift and I'm sure there would be heaps of there counts showing that they are being attacked by toxins in the bloodstream.I would guarantee that if you had 1000's of participants (there healthy brothers and sisters) that you'd notice these shifts away from what is normal and average.The first thing I ask anyone with cfs on the phone is do you sweat properly.I also find theres consequences that stick out like dog's b...ls of suffering pain and agony. one lady I visited just had here spine manipulated and the scar tissue around the spinal column was INCREDABLE according to her physio. The other thing is the heart- I alway's ask do you often go 80/50 90/50 in your blood pressure(heart disease -infection). I was lucky I only had a few that registered low 90/50 on a couple of occasions my biggy though was the tachycardia 100 to 120 for the whole year until I nailed it now it's 60 or 70 and my BP is 120 to 140 over 80.I think rich needs to hold someones hand with cfs and spend the day instead of hypothesising. And he may want to understand that he needs to conquer the whole gammit of medical ilness before he can take out cfs.Cfs starts with the heart and vascular system and you need them working properly before you can do anything. more later> > > Rich> > Your words and experiences are valid common medical scientific > > experiences. unfortunately this new way of doing things guarantee's> > the jobs for the boys, yet!!!! provides nothing for the patient.In> > today's way of running medicine an ilness like tuberculosis coming> > on the scene for the first time would take 20 years to get approved> > as legitimate and then possably another 20 years to show the> > processes of destruction on the body. I also see a lot of what you> > do as someone commenting on a californian earthquake from> > florida.If I get phoned by someone I'll drive hours across town> > because observing, discussing the hows and why's of there ilness and> > studying there bacteria- throat, sinus, blood and urine is so much> > more exciting than giving me literature to read by the same people> > that have no idea what is wrong with US... Do you form a solid> > opinion what goes wrong with people by studying the people or do you> > rely on the literature? you seem to lap up that we have genetic> > defects, which is just nauseus for me to read time and again..> > Try an innocent look at the people carrying sinus problems and there> > fall into FATIGUE ILNESS, these people are just honestly telling> > there sinus stories on the net, they have no idea cfs is what they> > are getting into.Sinus disease tied in with cfs- wouldn't that be a> > first....> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 Kate It's the typical BS that you get when dealing with brain dead people.The next biggest BS is that you have 100 things that are NOT RIGHT yet as you heard from the golden one everythings fine in our tests.My whole mission since getting ill was working out why so much of what I give as samples bothers and irtritates me heaps yet the labs are missing everything.The challenge there is that everything you give is measured on wether you die soon or not, no-one's interested in pain, fatigue or chronic situations. tony > > > somone explained there cfs experience. I went to bed woke > > up 2 hours later and felt like a truck hit me, I then felt like I > > had acid running thru my veins. This is someone in australia that > > was a leading journalist that got struck down with cfs about 7 years > > ago.Now the medical literature- regardless of how well and by whom > > it's written doesn't tell it like this, it's more ...something... > > psychobabble... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 Ann Just briefly- healthy folk have 2 billion bacteria in there mouth and throat your counts would be 100 billion working down your neck thru your shoulders down your rib cage into your chest and everything in between glands and all that can harbour them.Then there also going upwards and attacking your brain.Sinus bacteria don't just sit in the sinus they actually disseminate throughout the body and attack firstly the high blood flow regions of the sexual organs and they go around and burn out your circulation and clump and cause micro clots throughout your body, often you then go on to develop cysts. It's so simple to tell you have the biggest infection in the world by simply finding an environemnt that stimulates bacteria ;'HIGH CO2' area's and the bugs start to P-a-r-t-y.If you think the tachycardia doesn't fit blood poisoning and heart infection go on and get coached by the golden one on how to fix your glutathione levels. If you read this forum carefully people mainly do better by using at least 2 agents antimicrobial /antifungal and understanding that you need to fix a heart infection with the right drug combo's and strengths.Nothing gets fixed with 3 amoxacillins a day, in hospital settings they can give 50 times this amount.The other important thing is high levels of salt or recoup to try and build your blood volume so you can actually repair things and detoxify by getting the blood flowing-stagnation in nature is a disaster, even in the body you grow fungi/ pseudonomads, wounds don't heal because they are hindered of blood/oxygen and nutrients. Also regardless of what anyone tells you in any testing it's all lazy ass stuff so don't bother believeing most that is thrown at you most things need to be put under pressure to fail and they don't bother doing this. my fathers liver is fried yet his tests were normal. more later > > > > > Rich > > > Your words and experiences are valid common medical scientific > > > experiences. unfortunately this new way of doing things > guarantee's > > > the jobs for the boys, yet!!!! provides nothing for the > patient.In > > > today's way of running medicine an ilness like tuberculosis > coming > > > on the scene for the first time would take 20 years to get > approved > > > as legitimate and then possably another 20 years to show the > > > processes of destruction on the body. I also see a lot of what > you > > > do as someone commenting on a californian earthquake from > > > florida.If I get phoned by someone I'll drive hours across town > > > because observing, discussing the hows and why's of there ilness > and > > > studying there bacteria- throat, sinus, blood and urine is so > much > > > more exciting than giving me literature to read by the same > people > > > that have no idea what is wrong with US... Do you form a solid > > > opinion what goes wrong with people by studying the people or do > you > > > rely on the literature? you seem to lap up that we have genetic > > > defects, which is just nauseus for me to read time and again.. > > > Try an innocent look at the people carrying sinus problems and > there > > > fall into FATIGUE ILNESS, these people are just honestly telling > > > there sinus stories on the net, they have no idea cfs is what > they > > > are getting into.Sinus disease tied in with cfs- wouldn't that > be a > > > first.... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 Ann Neurologists never, ever, ever, ever diagnose an infection of the nervous system, this has never occured they are the kings and queens of doing squat.Actually even worse they may manage you for life with something that really doesn't cut it.I would rather take two aspro's than visit those clowns. > > > > > Rich > > > Your words and experiences are valid common medical scientific > > > experiences. unfortunately this new way of doing things > guarantee's > > > the jobs for the boys, yet!!!! provides nothing for the > patient.In > > > today's way of running medicine an ilness like tuberculosis > coming > > > on the scene for the first time would take 20 years to get > approved > > > as legitimate and then possably another 20 years to show the > > > processes of destruction on the body. I also see a lot of what > you > > > do as someone commenting on a californian earthquake from > > > florida.If I get phoned by someone I'll drive hours across town > > > because observing, discussing the hows and why's of there ilness > and > > > studying there bacteria- throat, sinus, blood and urine is so > much > > > more exciting than giving me literature to read by the same > people > > > that have no idea what is wrong with US... Do you form a solid > > > opinion what goes wrong with people by studying the people or do > you > > > rely on the literature? you seem to lap up that we have genetic > > > defects, which is just nauseus for me to read time and again.. > > > Try an innocent look at the people carrying sinus problems and > there > > > fall into FATIGUE ILNESS, these people are just honestly telling > > > there sinus stories on the net, they have no idea cfs is what > they > > > are getting into.Sinus disease tied in with cfs- wouldn't that > be a > > > first.... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 Kate wrote: > Tony, I hear you. I just had the worst doctor appointment in my life. My > doctor told me I'm making my son sick and what we need to do is have a > positive attitude and get exercise etc. All the BS, but this is after > years of telling him symptoms and handing him literature. It's like he > hasn't heard a damn thing. I Guess that is an expression for that he does not know what to do. or dont want to do. I am a son of a chronic ill mother( borelia) she didn't get a proper diagnos and what I see today (i am 50) we basically had/have the same problem. My son has periods with symptoms. I suspect that I have had borelia from very young or born with it and that has some implications on my immunsystem and how it has developt. What would the difference be in grade of handicap between a newly(<5 years) and one born and repeatedly infected. I believe it's better to be open and tell the children so that they understand that they are ill and if they need to rest it is important that they do that or do what is needed. If my son has symptoms it's better for him to stay home that to try to push on. My grandmother help out when I was kid and we were part of the summers away from mother. We kids were never told, and i guess my mother belived the MD's and at that time Borelia/Lyme was a non existing illness. Quote Link to comment Share on other sites More sharing options...
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