Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 For those of you who have been using the protocol for a while, I was just interested to get your opinions on why this protocol has not caught on in the mainstream yet? From reading Dr. Goldberg's papers and presentations, it seems as though he's been fighting for this immune dysfunction connection to be recognized for a long while now. Why do you all think the medical community is so reluctant? What are the political reasons, if any? Just curious, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 Personally, I feel that it's because the American Academy of Pediatrics persists in considering it a development, psychological disorder for which there is no treatment and not a medical illness. And, because of all the controversy around the vaccination arguments.that issue has detracted from the issues that face our children dealing with this medical issue. Our pediatrician went off on a tangent just the other day, very angrily I might add, about Dr. Wakefield and what a criminal quack he is. I could not even get a word in edgewise that my son has a completely different issue. Kristy Nardini Tazzini Stainless Steel Bottles www.tazzini.com kristy@... 858.243.1929 <http://www.facebook.com/tazzinicompany> Find us on Facebook! <http://www.twitter.com/tazzini> Follow us on Twitter! From: [mailto: ] On Behalf Of moniquedias26 Sent: Thursday, March 10, 2011 9:57 AM Subject: Why the reluctance? For those of you who have been using the protocol for a while, I was just interested to get your opinions on why this protocol has not caught on in the mainstream yet? From reading Dr. Goldberg's papers and presentations, it seems as though he's been fighting for this immune dysfunction connection to be recognized for a long while now. Why do you all think the medical community is so reluctant? What are the political reasons, if any? Just curious, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 One reason is that Dr. Goldberg can be a little antagonistic, he cares for the children but can be hard to get along with. Another reason is that there has been so much controversy concerning the causes/treatments of autism that many pediatricians are probably afraid of the controversy of either being associated with " big pharma " or the DAN - autism speaks crowd. Just a thought.  From: moniquedias26 <moniquedias26@...> Subject: Why the reluctance? Date: Thursday, March 10, 2011, 12:57 PM  For those of you who have been using the protocol for a while, I was just interested to get your opinions on why this protocol has not caught on in the mainstream yet? From reading Dr. Goldberg's papers and presentations, it seems as though he's been fighting for this immune dysfunction connection to be recognized for a long while now. Why do you all think the medical community is so reluctant? What are the political reasons, if any? Just curious, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 I agree - it could also be a variety of reasons like There is not much studies probably because they are not done and cannot be done on kids easily Possible vaccine connection to the abnormal immune system - vaccines are sacrosanct for the medical community, media where vaccine profits are responsible for several folks livelihood. People who speak against are ostracized by their group like the AAP. There is a good ecosystem of providers - researchers, dev peadetricians, psychologist, aba guys etc that have a good businesses from special needs child (our dev ped said that 1/3rd of his practice is Autism and he also emphatically stated that Autism and immune system have no connection whatsoever) - what would happen to his practice if folks started going to Immunologist instead of him. Also, i love Dr G and god bless his heart for helping all the children but his approach and style may not be politically the best to win support for such changes I think the best think that can happen is classification of the disease and better diagnosis like encephalopathy, orneuroimmune dysfunction instead of an umbrella autism. An theoretical analogy: What would have happened to cancer patients or blood cancer patients to be all bundled into one diseases with one set of treatment options as the clinical symptoms are largely the same. Think about it - all researchers studying it as one disease, recommending one set of intervention etc. To further the analogy, say a compound in Gas was found to be causing the increasing rate of cancer but the gas industry fearing the worse is spending tonnes of money diffusing the concerns and preventing any changes the way gas is made or used calling the ones who challenge it as anti-growth or something like that (again I just made the analogy up for making my point on Autism). That is pretty much what is happening to Autism today. ________________________________ From: Kristy Nardini <knardini@...> Sent: Thu, March 10, 2011 10:49:57 AM Subject: RE: Why the reluctance? Personally, I feel that it's because the American Academy of Pediatrics persists in considering it a development, psychological disorder for which there is no treatment and not a medical illness. And, because of all the controversy around the vaccination arguments.that issue has detracted from the issues that face our children dealing with this medical issue. Our pediatrician went off on a tangent just the other day, very angrily I might add, about Dr. Wakefield and what a criminal quack he is. I could not even get a word in edgewise that my son has a completely different issue. Kristy Nardini Tazzini Stainless Steel Bottles www.tazzini.com kristy@... 858.243.1929 <http://www.facebook.com/tazzinicompany> Find us on Facebook! <http://www.twitter.com/tazzini> Follow us on Twitter! From: [mailto: ] On Behalf Of moniquedias26 Sent: Thursday, March 10, 2011 9:57 AM Subject: Why the reluctance? For those of you who have been using the protocol for a while, I was just interested to get your opinions on why this protocol has not caught on in the mainstream yet? From reading Dr. Goldberg's papers and presentations, it seems as though he's been fighting for this immune dysfunction connection to be recognized for a long while now. Why do you all think the medical community is so reluctant? What are the political reasons, if any? Just curious, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2011 Report Share Posted March 11, 2011 Money, period. The CDC and the FDA control what are recommended treatments for Autism. The behavioral issues are considered a psyc illness, their interpretation can not change because their careers are based on supporting that this is a psyc issue and there are billions and billions spent of this entrenched approach. Additionally the top scientists at the CDC will not change, To reverse this position would likely end their professional life in the public sector. Add to that the lobbing power of big medicine. There are billions spent on treatments that do nothing to reverse or cure anyone. Therapy for ever is the plan. The dollars behind this are both public and private. Big Med supports the CDC and the CDC owns many many patents that Big Med pays royalties on.They will never ever admit they have been wrong for several decades. XMRV is the first provable discovery as a possible root medical cause for this condition. Other viral issues can be proven as well. Still the only recommendation the CDC can offer is speech therapy. ________________________________ From: moniquedias26 <moniquedias26@...> Sent: Thu, March 10, 2011 12:57:24 PM Subject: Why the reluctance? For those of you who have been using the protocol for a while, I was just interested to get your opinions on why this protocol has not caught on in the mainstream yet? From reading Dr. Goldberg's papers and presentations, it seems as though he's been fighting for this immune dysfunction connection to be recognized for a long while now. Why do you all think the medical community is so reluctant? What are the political reasons, if any? Just curious, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2011 Report Share Posted March 12, 2011 Hi , I believe it's all about the paradigms. If this is a 'developmental disorder' or psychiatric illness, then it would make absolutely no sense to treat infections. The only way to get an answer as to why medicine hasn't gotten on board with this is to study the history of researching CFS. A couple of books, like " The Virus Within " (about HHV6) and especially " Osler's Web " give you a pretty good overview of how research sometimes progresses, and sometimes doesn't. You can also look at how the AIDS epidemic played out in the beginning with " The Band Played On " (or 'and the'...) - they only made the progress they did because of a powerful uprising from the patient community that brought major funding dollars to their illness. Of COURSE it's also about money - dollars for research, how they're assigned, etc, but that money still depends apon paradigms. Very few doctors are aware of neuroimmunology. The research that supports come from other neuroimmune diseases, for instance HIV dementia, MS, bipolar and schizophrenia (they're slowly seeing the connections there to infection but not doing anything about it yet), and Alzheimer's. Even research on the flu is very important to this paradigm in studying the immune response to the flu and how it creates " sickness behavior " . From the perspective, and from the perspective of immunologists and infectious disease specialists that Dr G has worked closely with in developing the plan of care, if you have a dysfunctional immune system (which we know in that our kids do), and possibly chronic infection (again a huge part of the paradigm), and especially if it does turn out that a retrovirus is one of the core problems in CFS & 'autism', then the long-term treatment is critical in preventing resistance, and it is in line with how people w/HIV are treated for their long-term risks of serious infections. In HHV6, for instance (which almost every person has by age 2), the ability of some of these herpes viruses to rapidly mutate and develop resistance to the few antivirals we can use is staggering. In fact, it has been found recently that even *latent* HHV6 (not even an active infection but rather supposedly appropriately suppressed by the immune system) is capable of modulating the immune response. That's a pretty big finding - I think we've heard less about that just because XMRV news came out around that same time. But it offers a possible explanation as to why researchers looking so closely at this virus associated with CFS and I think even AIDS (maybe especially AIDS?) have been unable to show a connection between active infection and the illness(es) - because it doesn't even have to be 'active' to be causing or at least contributing to dysfunction. Without some kind of firm " proof " - something clearly measurable and definable - a biomarker - mainstream medicine isn't going to view our kids as sick, much less warrant these long-term meds at the higher treatment doses. In CFS, no one has been able to prove a consistent viral infection across the board - not our best researchers, although we can definitely show some associations to subclasses. Not to mention that some viruses don't behave the same in some people as they do in others. There's no proof that there are active serious fungal infections in nids - in fact, I believe very few of our kids ever develop a dangerous fungal infection that could kill them. My paradigm is that their immune systems are misfiring against it. They may be 'overcolonized' in their gut, but this isn't dangerous - it really isn't in the sense that it can't kill you - not if the immune system wasn't responding so inappropriately to it. But we all know the consequences to our kids' health and behavior when they have too much - it just isn't 'proven' in the mainstream community. Did you know that the illness our kids have was never researched as a possible illness? The autism society just said " Hey, there's all these kids that have a lot of these symptoms without having all of them, and we need to expand our criteria for the diagnosis " and the medical community said OK without any scientific proof that they were the same. The DAN! community has done a better job than some by banding together and funding research, but they have been recycling research that has already been done in CFS and rejected. The paradigm is based on 25+ years of research already done in Chronic Fatigue Syndrome. But there's a big difference between the infectious disease & immune dysfunction model and the alternative medicine paradigm in the dan community as well. Our view of their paradigm is that they are trying to address the downstream results of a core problem, and fix it by fixing vitamin levels, removing chemicals/metals (that believes get stored up because the immune system naturally disables the function of dumping our metals whenever the immune system is activated, and returns to it's normal function and dumps metals just fine on it's own when/if the immune system settles down later). It's ideas about GFCF diet started out that casein and gluten molecules were crossing the blood brain barrier and causing opiate effects, whereas our view is the already proven stimulation of the immune system that dairy (not casein) is already known to cause and that those parts of the immune system are already overexpressed and causing symptoms. Much of the paradigm comes across as heresy to the DAN! community ... but more and more of them are moving in the direction of antivirals and antifungals years after I first started studying all this. Years ago, I almost never saw a DAN! recommendation for these " powerful " drugs (antivirals, antifungals) - the idea of using antifungals or any rx (gasp! an SSRI!! how horrible!) was just appalling to many. But now they're starting more and more to mimic some of the protocol, and I believe they're just now coming close to where has been since the 90s. They started with a clean slate and an alternative medicine paradigm looking for answers, and we started in the middle of a CFS epidemic. And because they did 'hit' on a few things (removing dairy especially), it certainly reinforced their paradigm to them as well. There are so many examples of how differences in paradigms can emerge based on end results and how we can find that they can change in a blink and be the result of something entirely different than we ever thought. I can't even list them, although we've posted lots of examples and variations that you might be able to find in the files. My pediatrician's favorite was always 'the H.Pylori guy " - where before it was thought that the acidic climate of the stomach could NEVER possibly support a bacterial infection... and they found out that was completely wrong. Another big one is chelation - did you know that chelation can have a direct modulating effect on some of the cytokines implicated in ? That can explain some of the dramatic improvements seen in a subclass of kids that are chelated who then regress immediately after stopping chelation. But just because we see improvements, though, doesn't automatically assume that this is a safe way to do this. Dr G has seen that many of these kids take much longer afterwards for their immune systems to stabilize under than those who never had chelation. Mainstream medicine really does have high standards for 'proof' in most cases. We haven't really met those standards yet - and I suspect the biggest cause has been not having a biomarker to identify illness by. Dr Klimas may have found one now, and more research to back it up and learn more about it is pending. And XMRV and MLVs could very well turn out to be " the "  biggest biomarker of all. What's really eye-opening, though, are the similarities in developmental delays and speech problems in HIV-positive children and 'autism'.  One study I read suggested that monitoring speech may be a tool for determining  whether or not an HIV+ child should start antiretroviral therapy or not. Even in the AIDS community with all the dollars, they don't have a firm understanding of how AIDS causes the cognitive dysfunction that everyone agrees on, even independent of their CD4 counts. As that research progresses, maybe all neuroimmune research will progress. Same with Alzheimers - the paradigm started out that the plaques seen in the brain were the core problem (even though they weren't sure yet how they were happening). Then when they successfully managed to remove some of those plaques (in an animal model I think?) something happened (either they didn't improve or they got worse?) that suddenly suggests that the whole paradigm of the plaques being the problem may be wrong - but rather that those plaques (not sure if I'm even spelling that right or getting this summary even half right) may be a *protective mechanism* going on inside the brain, and they're looking even harder at herpes viruses being a part of the cause of that illness.  I believe one of the biggest problems in how research has progressed so poorly in Chronic Fatigue Syndrome is simply that we lacked the technology and knowledge of the immune system that has been gained since the epidemic started, but it is the arrogance of so many doctors in the government especially simply assigning CFS as a women's disease and a psychiatric illness just because they couldn't find a cause is what has damaged so many of our kids (not to mention all those in the CFS community). THAT was criminal. Now another paradigm is getting real interesting (not to start a controversy or anything), but it has been believed thoughout the 'vaccine community' that some of the bits of animal viruses in tissues used in research were not infectious in humans. And suddenly we're hearing that XMRV may be a man-made lab contaminant - and a highly infectious one. Surely we've already heard by now the disputes in the vaccine debates that some of these cells could contribute to immune dysfunction. What if it turns out that XMRV is even in some of our vaccines? Then that's going to even hit our paradigm a bit hard ... not the core idea of it that vaccines alone do not cause autism but are rather the result of what is happening with the immune dysfunction. What if it turns out that some kids were literally injected with it? But even then, not everyone with XMRV develops illness, and we know that we can prevent autism siblings of affected children by following diet guidelines in pregnancy and the first couple of years of life, as well as modifying the vaccine schedule, whether a child has XMRV or not - so again that's going to still support the vaccines-don't-cause - spreading an infection by that method wouldn't quite be the same thing, because it's still the infection causing illness, not the vaccine it'self (if that were to turn out to be the case - that's simply speculation right now and I'm not even sure I read what little I read about it right anyway). My brain hurts now. I'm going to stop my rambling in a sec. All I can say is we think we know but we really often don't know jack. So when we know even less than jack in something like 'autism', then it takes a doc with pretty freakin big cajones to go ahead and try to treat this as a disease, and I respect most any doctor who has done their very best to treat in light of so many different paradigms and what they mean. But they can do more harm than good - that's the worst part of all this. That's what makes it so hard to choose. That's one reason I choose Goldberg's plan (influenced directly by Dr Klimas who I think is so awesome, and Dr Galpin, nobel laureat who I haven't been able to find as much about but worked closely with Dr G for years)  and why I & my kids see Dr . Less is more here, and has held to it's core paradigm the entire time I've been following it. Nothing has come about to disprove it, and many many things have been published long after it's hypothesis was formed to support it and expand on it. I also believe like Dr G says - the meds we're using right now still aren't enough. They're not going to recover everybody. More research is desperately needed on agents (many already in existence Dr G says) that will treat this disease, and it takes funding to get that done. Even if XMRV turns out to be a big player, we're going to need more than just HAART (highly active anti retroviral therapy I think) to treat our kids, and the immune modulating agents Dr G has been saying we need are still going to be players. I suspect one of those is peptide T, and some other things that WPI say they're starting to look into as possible agents for CFS. So don't give up hope just because the medical community so far hasn't grabbed on. Before, there hasn't been enough for them to yet (because of what has gone on in the government to block seeing this as anything but psychiatric and developmental). But things are changing rapidly. I hope.... ________________________________ From: moniquedias26 <moniquedias26@...> Sent: Thu, March 10, 2011 11:57:24 AM Subject: Why the reluctance?  For those of you who have been using the protocol for a while, I was just interested to get your opinions on why this protocol has not caught on in the mainstream yet? From reading Dr. Goldberg's papers and presentations, it seems as though he's been fighting for this immune dysfunction connection to be recognized for a long while now. Why do you all think the medical community is so reluctant? What are the political reasons, if any? Just curious, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2011 Report Share Posted March 12, 2011 Hi everyone.  I think good proof is that a developmental disorder can't go from being 1 in 10,000 or 1 in 1000 (whatever the actual number is?) to 1 and 91 and growing. You do not see those increases in any other developmental disorder. Also, for patients of Doctor Goldberg, their labs say speak for themselves but I am not sure how much due to variances and stubborness on the part of the medical establishment.  So I am actually not stating all the items that everyone already has about why there hasn't been something done. I am trying to talk about what we should do in the future. Besides buying the book and trying to get their pediatricians to review, once Dr. Goldberg's new website is up, I encourage everyone to follow the activism section of the website. We need to actively campaign for treatment, if possible demonstrate our success cases, and advocate for changing the mindset that our kids are society's throw-aways.  This is absolutely what we need to do and all of us parents no matter how busy and stressed we are, need to take a few moments to do so and not take no for an answer. Otherwise, we will continue to be ignored and the sad part is if our kids don't get better, with this country going for broke, what is going to be available for our kids as adults? We want them all to get better, reach their full potential, and to be independent.  I am keeping my fingers crossed, but the only way to get anything done is in numbers and using all of our resources to get the message out:)  Lynn From: <thecolemans4@...> Subject: Re: Why the reluctance? Date: Saturday, March 12, 2011, 3:07 PM  Hi , I believe it's all about the paradigms. If this is a 'developmental disorder' or psychiatric illness, then it would make absolutely no sense to treat infections. The only way to get an answer as to why medicine hasn't gotten on board with this is to study the history of researching CFS. A couple of books, like " The Virus Within " (about HHV6) and especially " Osler's Web " give you a pretty good overview of how research sometimes progresses, and sometimes doesn't. You can also look at how the AIDS epidemic played out in the beginning with " The Band Played On " (or 'and the'...) - they only made the progress they did because of a powerful uprising from the patient community that brought major funding dollars to their illness. Of COURSE it's also about money - dollars for research, how they're assigned, etc, but that money still depends apon paradigms. Very few doctors are aware of neuroimmunology. The research that supports come from other neuroimmune diseases, for instance HIV dementia, MS, bipolar and schizophrenia (they're slowly seeing the connections there to infection but not doing anything about it yet), and Alzheimer's. Even research on the flu is very important to this paradigm in studying the immune response to the flu and how it creates " sickness behavior " . From the perspective, and from the perspective of immunologists and infectious disease specialists that Dr G has worked closely with in developing the plan of care, if you have a dysfunctional immune system (which we know in that our kids do), and possibly chronic infection (again a huge part of the paradigm), and especially if it does turn out that a retrovirus is one of the core problems in CFS & 'autism', then the long-term treatment is critical in preventing resistance, and it is in line with how people w/HIV are treated for their long-term risks of serious infections. In HHV6, for instance (which almost every person has by age 2), the ability of some of these herpes viruses to rapidly mutate and develop resistance to the few antivirals we can use is staggering. In fact, it has been found recently that even *latent* HHV6 (not even an active infection but rather supposedly appropriately suppressed by the immune system) is capable of modulating the immune response. That's a pretty big finding - I think we've heard less about that just because XMRV news came out around that same time. But it offers a possible explanation as to why researchers looking so closely at this virus associated with CFS and I think even AIDS (maybe especially AIDS?) have been unable to show a connection between active infection and the illness(es) - because it doesn't even have to be 'active' to be causing or at least contributing to dysfunction. Without some kind of firm " proof " - something clearly measurable and definable - a biomarker - mainstream medicine isn't going to view our kids as sick, much less warrant these long-term meds at the higher treatment doses. In CFS, no one has been able to prove a consistent viral infection across the board - not our best researchers, although we can definitely show some associations to subclasses. Not to mention that some viruses don't behave the same in some people as they do in others. There's no proof that there are active serious fungal infections in nids - in fact, I believe very few of our kids ever develop a dangerous fungal infection that could kill them. My paradigm is that their immune systems are misfiring against it. They may be 'overcolonized' in their gut, but this isn't dangerous - it really isn't in the sense that it can't kill you - not if the immune system wasn't responding so inappropriately to it. But we all know the consequences to our kids' health and behavior when they have too much - it just isn't 'proven' in the mainstream community. Did you know that the illness our kids have was never researched as a possible illness? The autism society just said " Hey, there's all these kids that have a lot of these symptoms without having all of them, and we need to expand our criteria for the diagnosis " and the medical community said OK without any scientific proof that they were the same. The DAN! community has done a better job than some by banding together and funding research, but they have been recycling research that has already been done in CFS and rejected. The paradigm is based on 25+ years of research already done in Chronic Fatigue Syndrome. But there's a big difference between the infectious disease & immune dysfunction model and the alternative medicine paradigm in the dan community as well. Our view of their paradigm is that they are trying to address the downstream results of a core problem, and fix it by fixing vitamin levels, removing chemicals/metals (that believes get stored up because the immune system naturally disables the function of dumping our metals whenever the immune system is activated, and returns to it's normal function and dumps metals just fine on it's own when/if the immune system settles down later). It's ideas about GFCF diet started out that casein and gluten molecules were crossing the blood brain barrier and causing opiate effects, whereas our view is the already proven stimulation of the immune system that dairy (not casein) is already known to cause and that those parts of the immune system are already overexpressed and causing symptoms. Much of the paradigm comes across as heresy to the DAN! community ... but more and more of them are moving in the direction of antivirals and antifungals years after I first started studying all this. Years ago, I almost never saw a DAN! recommendation for these " powerful " drugs (antivirals, antifungals) - the idea of using antifungals or any rx (gasp! an SSRI!! how horrible!) was just appalling to many. But now they're starting more and more to mimic some of the protocol, and I believe they're just now coming close to where has been since the 90s. They started with a clean slate and an alternative medicine paradigm looking for answers, and we started in the middle of a CFS epidemic. And because they did 'hit' on a few things (removing dairy especially), it certainly reinforced their paradigm to them as well. There are so many examples of how differences in paradigms can emerge based on end results and how we can find that they can change in a blink and be the result of something entirely different than we ever thought. I can't even list them, although we've posted lots of examples and variations that you might be able to find in the files. My pediatrician's favorite was always 'the H.Pylori guy " - where before it was thought that the acidic climate of the stomach could NEVER possibly support a bacterial infection... and they found out that was completely wrong. Another big one is chelation - did you know that chelation can have a direct modulating effect on some of the cytokines implicated in ? That can explain some of the dramatic improvements seen in a subclass of kids that are chelated who then regress immediately after stopping chelation. But just because we see improvements, though, doesn't automatically assume that this is a safe way to do this. Dr G has seen that many of these kids take much longer afterwards for their immune systems to stabilize under than those who never had chelation. Mainstream medicine really does have high standards for 'proof' in most cases. We haven't really met those standards yet - and I suspect the biggest cause has been not having a biomarker to identify illness by. Dr Klimas may have found one now, and more research to back it up and learn more about it is pending. And XMRV and MLVs could very well turn out to be " the "  biggest biomarker of all. What's really eye-opening, though, are the similarities in developmental delays and speech problems in HIV-positive children and 'autism'.  One study I read suggested that monitoring speech may be a tool for determining  whether or not an HIV+ child should start antiretroviral therapy or not. Even in the AIDS community with all the dollars, they don't have a firm understanding of how AIDS causes the cognitive dysfunction that everyone agrees on, even independent of their CD4 counts. As that research progresses, maybe all neuroimmune research will progress. Same with Alzheimers - the paradigm started out that the plaques seen in the brain were the core problem (even though they weren't sure yet how they were happening). Then when they successfully managed to remove some of those plaques (in an animal model I think?) something happened (either they didn't improve or they got worse?) that suddenly suggests that the whole paradigm of the plaques being the problem may be wrong - but rather that those plaques (not sure if I'm even spelling that right or getting this summary even half right) may be a *protective mechanism* going on inside the brain, and they're looking even harder at herpes viruses being a part of the cause of that illness.  I believe one of the biggest problems in how research has progressed so poorly in Chronic Fatigue Syndrome is simply that we lacked the technology and knowledge of the immune system that has been gained since the epidemic started, but it is the arrogance of so many doctors in the government especially simply assigning CFS as a women's disease and a psychiatric illness just because they couldn't find a cause is what has damaged so many of our kids (not to mention all those in the CFS community). THAT was criminal. Now another paradigm is getting real interesting (not to start a controversy or anything), but it has been believed thoughout the 'vaccine community' that some of the bits of animal viruses in tissues used in research were not infectious in humans. And suddenly we're hearing that XMRV may be a man-made lab contaminant - and a highly infectious one. Surely we've already heard by now the disputes in the vaccine debates that some of these cells could contribute to immune dysfunction. What if it turns out that XMRV is even in some of our vaccines? Then that's going to even hit our paradigm a bit hard ... not the core idea of it that vaccines alone do not cause autism but are rather the result of what is happening with the immune dysfunction. What if it turns out that some kids were literally injected with it? But even then, not everyone with XMRV develops illness, and we know that we can prevent autism siblings of affected children by following diet guidelines in pregnancy and the first couple of years of life, as well as modifying the vaccine schedule, whether a child has XMRV or not - so again that's going to still support the vaccines-don't-cause - spreading an infection by that method wouldn't quite be the same thing, because it's still the infection causing illness, not the vaccine it'self (if that were to turn out to be the case - that's simply speculation right now and I'm not even sure I read what little I read about it right anyway). My brain hurts now. I'm going to stop my rambling in a sec. All I can say is we think we know but we really often don't know jack. So when we know even less than jack in something like 'autism', then it takes a doc with pretty freakin big cajones to go ahead and try to treat this as a disease, and I respect most any doctor who has done their very best to treat in light of so many different paradigms and what they mean. But they can do more harm than good - that's the worst part of all this. That's what makes it so hard to choose. That's one reason I choose Goldberg's plan (influenced directly by Dr Klimas who I think is so awesome, and Dr Galpin, nobel laureat who I haven't been able to find as much about but worked closely with Dr G for years)  and why I & my kids see Dr . Less is more here, and has held to it's core paradigm the entire time I've been following it. Nothing has come about to disprove it, and many many things have been published long after it's hypothesis was formed to support it and expand on it. I also believe like Dr G says - the meds we're using right now still aren't enough. They're not going to recover everybody. More research is desperately needed on agents (many already in existence Dr G says) that will treat this disease, and it takes funding to get that done. Even if XMRV turns out to be a big player, we're going to need more than just HAART (highly active anti retroviral therapy I think) to treat our kids, and the immune modulating agents Dr G has been saying we need are still going to be players. I suspect one of those is peptide T, and some other things that WPI say they're starting to look into as possible agents for CFS. So don't give up hope just because the medical community so far hasn't grabbed on. Before, there hasn't been enough for them to yet (because of what has gone on in the government to block seeing this as anything but psychiatric and developmental). But things are changing rapidly. I hope.... ________________________________ From: moniquedias26 <moniquedias26@...> Sent: Thu, March 10, 2011 11:57:24 AM Subject: Why the reluctance?  For those of you who have been using the protocol for a while, I was just interested to get your opinions on why this protocol has not caught on in the mainstream yet? From reading Dr. Goldberg's papers and presentations, it seems as though he's been fighting for this immune dysfunction connection to be recognized for a long while now. Why do you all think the medical community is so reluctant? What are the political reasons, if any? Just curious, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2011 Report Share Posted March 19, 2011 You all have made some really interesting points. What efforts are being made, as far as activism, to get the medical community on board. Are there any fundraising or awareness efforts we can get involved in? ________________________________ From: <thecolemans4@...> Sent: Sat, March 12, 2011 12:07:26 PM Subject: Re: Why the reluctance?  Hi , I believe it's all about the paradigms. If this is a 'developmental disorder' or psychiatric illness, then it would make absolutely no sense to treat infections. The only way to get an answer as to why medicine hasn't gotten on board with this is to study the history of researching CFS. A couple of books, like " The Virus Within " (about HHV6) and especially " Osler's Web " give you a pretty good overview of how research sometimes progresses, and sometimes doesn't. You can also look at how the AIDS epidemic played out in the beginning with " The Band Played On " (or 'and the'...) - they only made the progress they did because of a powerful uprising from the patient community that brought major funding dollars to their illness. Of COURSE it's also about money - dollars for research, how they're assigned, etc, but that money still depends apon paradigms. Very few doctors are aware of neuroimmunology. The research that supports come from other neuroimmune diseases, for instance HIV dementia, MS, bipolar and schizophrenia (they're slowly seeing the connections there to infection but not doing anything about it yet), and Alzheimer's. Even research on the flu is very important to this paradigm in studying the immune response to the flu and how it creates " sickness behavior " . From the perspective, and from the perspective of immunologists and infectious disease specialists that Dr G has worked closely with in developing the plan of care, if you have a dysfunctional immune system (which we know in that our kids do), and possibly chronic infection (again a huge part of the paradigm), and especially if it does turn out that a retrovirus is one of the core problems in CFS & 'autism', then the long-term treatment is critical in preventing resistance, and it is in line with how people w/HIV are treated for their long-term risks of serious infections. In HHV6, for instance (which almost every person has by age 2), the ability of some of these herpes viruses to rapidly mutate and develop resistance to the few antivirals we can use is staggering. In fact, it has been found recently that even *latent* HHV6 (not even an active infection but rather supposedly appropriately suppressed by the immune system) is capable of modulating the immune response. That's a pretty big finding - I think we've heard less about that just because XMRV news came out around that same time. But it offers a possible explanation as to why researchers looking so closely at this virus associated with CFS and I think even AIDS (maybe especially AIDS?) have been unable to show a connection between active infection and the illness(es) - because it doesn't even have to be 'active' to be causing or at least contributing to dysfunction. Without some kind of firm " proof " - something clearly measurable and definable - a biomarker - mainstream medicine isn't going to view our kids as sick, much less warrant these long-term meds at the higher treatment doses. In CFS, no one has been able to prove a consistent viral infection across the board - not our best researchers, although we can definitely show some associations to subclasses. Not to mention that some viruses don't behave the same in some people as they do in others. There's no proof that there are active serious fungal infections in nids - in fact, I believe very few of our kids ever develop a dangerous fungal infection that could kill them. My paradigm is that their immune systems are misfiring against it. They may be 'overcolonized' in their gut, but this isn't dangerous - it really isn't in the sense that it can't kill you - not if the immune system wasn't responding so inappropriately to it. But we all know the consequences to our kids' health and behavior when they have too much - it just isn't 'proven' in the mainstream community. Did you know that the illness our kids have was never researched as a possible illness? The autism society just said " Hey, there's all these kids that have a lot of these symptoms without having all of them, and we need to expand our criteria for the diagnosis " and the medical community said OK without any scientific proof that they were the same. The DAN! community has done a better job than some by banding together and funding research, but they have been recycling research that has already been done in CFS and rejected. The paradigm is based on 25+ years of research already done in Chronic Fatigue Syndrome. But there's a big difference between the infectious disease & immune dysfunction model and the alternative medicine paradigm in the dan community as well. Our view of their paradigm is that they are trying to address the downstream results of a core problem, and fix it by fixing vitamin levels, removing chemicals/metals (that believes get stored up because the immune system naturally disables the function of dumping our metals whenever the immune system is activated, and returns to it's normal function and dumps metals just fine on it's own when/if the immune system settles down later). It's ideas about GFCF diet started out that casein and gluten molecules were crossing the blood brain barrier and causing opiate effects, whereas our view is the already proven stimulation of the immune system that dairy (not casein) is already known to cause and that those parts of the immune system are already overexpressed and causing symptoms. Much of the paradigm comes across as heresy to the DAN! community ... but more and more of them are moving in the direction of antivirals and antifungals years after I first started studying all this. Years ago, I almost never saw a DAN! recommendation for these " powerful " drugs (antivirals, antifungals) - the idea of using antifungals or any rx (gasp! an SSRI!! how horrible!) was just appalling to many. But now they're starting more and more to mimic some of the protocol, and I believe they're just now coming close to where has been since the 90s. They started with a clean slate and an alternative medicine paradigm looking for answers, and we started in the middle of a CFS epidemic. And because they did 'hit' on a few things (removing dairy especially), it certainly reinforced their paradigm to them as well. There are so many examples of how differences in paradigms can emerge based on end results and how we can find that they can change in a blink and be the result of something entirely different than we ever thought. I can't even list them, although we've posted lots of examples and variations that you might be able to find in the files. My pediatrician's favorite was always 'the H.Pylori guy " - where before it was thought that the acidic climate of the stomach could NEVER possibly support a bacterial infection... and they found out that was completely wrong. Another big one is chelation - did you know that chelation can have a direct modulating effect on some of the cytokines implicated in ? That can explain some of the dramatic improvements seen in a subclass of kids that are chelated who then regress immediately after stopping chelation. But just because we see improvements, though, doesn't automatically assume that this is a safe way to do this. Dr G has seen that many of these kids take much longer afterwards for their immune systems to stabilize under than those who never had chelation. Mainstream medicine really does have high standards for 'proof' in most cases. We haven't really met those standards yet - and I suspect the biggest cause has been not having a biomarker to identify illness by. Dr Klimas may have found one now, and more research to back it up and learn more about it is pending. And XMRV and MLVs could very well turn out to be " the "  biggest biomarker of all. What's really eye-opening, though, are the similarities in developmental delays and speech problems in HIV-positive children and 'autism'.  One study I read suggested that monitoring speech may be a tool for determining  whether or not an HIV+ child should start antiretroviral therapy or not. Even in the AIDS community with all the dollars, they don't have a firm understanding of how AIDS causes the cognitive dysfunction that everyone agrees on, even independent of their CD4 counts. As that research progresses, maybe all neuroimmune research will progress. Same with Alzheimers - the paradigm started out that the plaques seen in the brain were the core problem (even though they weren't sure yet how they were happening). Then when they successfully managed to remove some of those plaques (in an animal model I think?) something happened (either they didn't improve or they got worse?) that suddenly suggests that the whole paradigm of the plaques being the problem may be wrong - but rather that those plaques (not sure if I'm even spelling that right or getting this summary even half right) may be a *protective mechanism* going on inside the brain, and they're looking even harder at herpes viruses being a part of the cause of that illness.  I believe one of the biggest problems in how research has progressed so poorly in Chronic Fatigue Syndrome is simply that we lacked the technology and knowledge of the immune system that has been gained since the epidemic started, but it is the arrogance of so many doctors in the government especially simply assigning CFS as a women's disease and a psychiatric illness just because they couldn't find a cause is what has damaged so many of our kids (not to mention all those in the CFS community). THAT was criminal. Now another paradigm is getting real interesting (not to start a controversy or anything), but it has been believed thoughout the 'vaccine community' that some of the bits of animal viruses in tissues used in research were not infectious in humans. And suddenly we're hearing that XMRV may be a man-made lab contaminant - and a highly infectious one. Surely we've already heard by now the disputes in the vaccine debates that some of these cells could contribute to immune dysfunction. What if it turns out that XMRV is even in some of our vaccines? Then that's going to even hit our paradigm a bit hard ... not the core idea of it that vaccines alone do not cause autism but are rather the result of what is happening with the immune dysfunction. What if it turns out that some kids were literally injected with it? But even then, not everyone with XMRV develops illness, and we know that we can prevent autism siblings of affected children by following diet guidelines in pregnancy and the first couple of years of life, as well as modifying the vaccine schedule, whether a child has XMRV or not - so again that's going to still support the vaccines-don't-cause - spreading an infection by that method wouldn't quite be the same thing, because it's still the infection causing illness, not the vaccine it'self (if that were to turn out to be the case - that's simply speculation right now and I'm not even sure I read what little I read about it right anyway). My brain hurts now. I'm going to stop my rambling in a sec. All I can say is we think we know but we really often don't know jack. So when we know even less than jack in something like 'autism', then it takes a doc with pretty freakin big cajones to go ahead and try to treat this as a disease, and I respect most any doctor who has done their very best to treat in light of so many different paradigms and what they mean. But they can do more harm than good - that's the worst part of all this. That's what makes it so hard to choose. That's one reason I choose Goldberg's plan (influenced directly by Dr Klimas who I think is so awesome, and Dr Galpin, nobel laureat who I haven't been able to find as much about but worked closely with Dr G for years)  and why I & my kids see Dr . Less is more here, and has held to it's core paradigm the entire time I've been following it. Nothing has come about to disprove it, and many many things have been published long after it's hypothesis was formed to support it and expand on it. I also believe like Dr G says - the meds we're using right now still aren't enough. They're not going to recover everybody. More research is desperately needed on agents (many already in existence Dr G says) that will treat this disease, and it takes funding to get that done. Even if XMRV turns out to be a big player, we're going to need more than just HAART (highly active anti retroviral therapy I think) to treat our kids, and the immune modulating agents Dr G has been saying we need are still going to be players. I suspect one of those is peptide T, and some other things that WPI say they're starting to look into as possible agents for CFS. So don't give up hope just because the medical community so far hasn't grabbed on. Before, there hasn't been enough for them to yet (because of what has gone on in the government to block seeing this as anything but psychiatric and developmental). But things are changing rapidly. I hope.... ________________________________ From: moniquedias26 <moniquedias26@...> Sent: Thu, March 10, 2011 11:57:24 AM Subject: Why the reluctance?  For those of you who have been using the protocol for a while, I was just interested to get your opinions on why this protocol has not caught on in the mainstream yet? From reading Dr. Goldberg's papers and presentations, it seems as though he's been fighting for this immune dysfunction connection to be recognized for a long while now. Why do you all think the medical community is so reluctant? What are the political reasons, if any? Just curious, Quote Link to comment Share on other sites More sharing options...
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