Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 Has anybody else heard of or tried this Cobat (also called Taurox)? Interesting that it is an immune regulator but the research focuses mostly on fatigue. I wonder how it does at eliminating viruses and bacteria. I am surprised this has never been mentioned before. http://www.springboard4health.com/notebook/nutrients_cobat.html http://www.google.com/search?hl=en & lr= & ie=UTF-8 & oe=UTF-8 & as_qdr=all & q=taurox+imm\ une Doris ----- Original Message ----- From: Big Bad Bob I just made an interesting page for my website. Immune modulators http://www.geocities.com/GuaiWhey/modulators.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 I got info in the mail about this a few days ago and ordered it today, I will let you know how it goes. It is supposed to be a powerful immune modulator. The top URL you have here is the same info that was in my phamphlet. I could not find a URL to post, glad you did. Rita Has anybody else heard of or tried this Cobat (also called Taurox)? Interesting that it is an immune regulator but the research focuses mostly on fatigue. I wonder how it does at eliminating viruses and bacteria. I am surprised this has never been mentioned before. http://www.springboard4health.com/notebook/nutrients_cobat.html http://www.google.com/search?hl=en & lr= & ie=UTF-8 & oe=UTF-8 & as_qdr=all & q=taurox+imm\ une Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2004 Report Share Posted December 22, 2004 Does any one know about the effectiveness of MGN 3 and/or AHCC for balancing Th1/Th2, or any cytokines? Bonnie B Every day is be kind to animals day. Support Care2 Email: 1,400 whales may be killed this year. Take action! http://www.care2.com/go/z/17954 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2004 Report Share Posted December 22, 2004 > Does any one know about the effectiveness of MGN > 3 and/or AHCC for balancing Th1/Th2, or any > cytokines? > > Bonnie B > > > Every day is be kind to animals day. > Support Care2 Email: 1,400 whales may be killed this year. Take action! http://www.care2.com/go/z/17954 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2004 Report Share Posted December 22, 2004 > Does any one know about the effectiveness of MGN > 3 and/or AHCC for balancing Th1/Th2, or any > cytokines? > > Bonnie B > > > Every day is be kind to animals day. > Support Care2 Email: 1,400 whales may be killed this year. Take action! http://www.care2.com/go/z/17954 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2004 Report Share Posted December 25, 2004 Thanks for your reply to my question, . I looked up beta glucan and it said t hat this supplement helps the body produce more macrophages. I just found an incredible web page that gives comprehensive information about how to get out of our Th2 dominance. Among other things, it lists 28 immunomodulators for people who are Th2 dominant. It is: www.diagnose-me.com/cond/C104791.html Also on this site: www.diagnose-me.com/glossary/G799.html Three years ago, I went askjeeves.com when I wanted a good laugh. Now it has really improved. It is a good place to research our illness, so much so that I hardly ever go to google now. It has brought back some incredibly helpful results for me. To have pain in your brain sounds awful. I've never heard of that before. I hope you find something for it. Bonnie ---- Begin Original Message ---- From: " davidhall2020 " <davidhall@...> Sent: Thu, 23 Dec 2004 06:33:13 -0000 Subject: Re: Immune Modulators > Does any one know about the effectiveness of MGN > 3 and/or AHCC for balancing Th1/Th2, or any > cytokines? > > Bonnie B > > > Every day is be kind to animals day. > Support Care2 Email: 1,400 whales may be killed this year. Take action! http://www.care2.com/go/z/17954 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2004 Report Share Posted December 25, 2004 --- In , Bonnie, You're welcome for the Beta Glucan lead. It is suprising how many immundulators I tried before I got to that one which clearly helped. And yes, the right side brain pain is the doozy with we. This pain is kind of like sitting around fatigued of course, but with a knawing painful cavity that requires root canal or extraction asap, but know one seems to know what to do about it unlike a dental issue. I wonder if this problem is someting beyond immunomodulation for me now- perhaps damage as result of oxidative stress having injured the subcortical(feeling areas) of my brain. Its definitely a physical pain, but I need to constantly watch my reactivity to it and keep as cool headed as I can muster until this problem is solved. I would be interested in hearing from others who've had this or a similar symptom who solved it. Please keep a heads-up for me on this as you go along if its not too much to ask. Thanks, > looked up beta glucan and it said t > hat this supplement helps the body produce more > macrophages. > > I just found an incredible web page that gives > comprehensive information about how to get out of > our Th2 dominance. Among other things, it lists > 28 immunomodulators for people who are Th2 > dominant. It is: > www.diagnose-me.com/cond/C104791.html > Also on this site: > www.diagnose-me.com/glossary/G799.html > > Three years ago, I went askjeeves.com when I > wanted a good laugh. Now it has really improved. > It is a good place to research our illness, so > much so that I hardly ever go to google now. It > has brought back some incredibly helpful results > for me. > > To have pain in your brain sounds awful. I've > never heard of that before. I hope you find > something for it. > Bonnie > > > > I understand that MGN 3 is good for increasing NK > cell production in people. > I haven't heard or seen reports of it being used > too much among ME/CFS patients and I'm not sure > what AHCC is(?). > > > > I have regularly used the supplement > Beta Glucan at 50mg per night for the past few > years. Its immumodulative effect has completely > rid me of the weak flu-like feeling often report > by patients. > > > > Ampligen, another type of immunomodulator did the > same thing, but caused me some > disturbing(developed inflammation around the > heart I perceived) side effects. Neither > Ampligen nor Beta Glucan helped my right side > brain pain symptom. > > > > Its the biggie symptom for me, even more than > fatigue. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2004 Report Share Posted December 26, 2004 www.diagnose-me.com/cond/C104791.html needs a password www.diagnose-me.com/glossary/G799.html is listed here Definition Cytokines are chemical messengers that control immune responses. They are secreted by white blood cells, T cells, epithelial cells and some other body cells. There are at least 17 different kinds of interleuken and 3 classes of interferon called alpha, beta and gamma and various subsets. Interleukens and interferons are called " cytokines " and there are two general groupings, Th1 and Th2. Th1 (T-cell Helper type 1) promote cell-mediated immunity (CMI) while Th2 (T-cell Helper type 2) induce humoral immunity (antibodies). Also: Cytokine, TH1, TH2 Topics Related To Cytokines AIDS Relationship to Immune System Imbalance (TH2 Dominance) " In HIV progression to AIDS, there is a shift from Th1 (cellular immunity) to the less effective Th2 (humoral immunity)... " Chronic Fatigue / Fibromyalgia Syndrome Relationship to Immune System Imbalance (TH2 Dominance) " CFS patients are Th2 activated... " Colds and Influenza Recommendation Elderberry (Sambucus nigra) " By increasing inflammatory cytokine production, black elderberry extract may be beneficial to immune system activation and in the inflammatory process in healthy individuals or in patients with various diseases... " Hepatitis Relationship to Immune System Imbalance (TH2 Dominance) " It has been suggested that an impaired TH1 immune response appears to favor chronicity of hepatitis C infections... " Immune System Imbalance (TH2 Dominance) The Condition " The quality of an individual's immune system can be evaluated through the balance of cytokines it is producing... " Recommendation Neem " Neem can help balance a TH2 dominant immune system... " Recommendation Chlorella " Chlorella increases TH1 cytokines to help balance the immune system... " Recommendation Colostrum / Transfer Factor " Transfer factor may help to rebalance a TH2 dominant Immune system... " Recommendation DHEA " DHEA increases TH1 cytokines which help balance the immune system... " Recommendation Garlic " Garlic, raw or aged extract, promotes TH1 cytokines to help balance the immune system... " Recommendation Ginkgo Biloba " ...Elevated cortisol levels have a suppressing effect on TH1 cytokines... " Recommendation Glutathione " Glutathione levels in antigen-presenting cells determine whether Th1 or Th2 response patterns predominate [Proc Natl Acad Sci USA 1998 Mar 17;95(6): pp... " Recommendation IP6 - Inositol Hexaphosphate " IP6 - found in brown rice and corn and extracted as a commercial product - promotes NK function and thus helps balance a TH2 dominant immune system... " Recommendation MGN3 " ...It stimulates NK function and thus helps balance a TH2 dominant immune system... " Recommendation Monounsaturated Oils " Oils such as olive, hazelnut, coconut can enhance TH1 cytokines which help balance the immune system... " Recommendation Probiotics " The specific bacteria that that help balance a TH2 dominant immune system are... " Recommendation Thymic Factors " Thymic factors highly refined or crudely extracted help balance a TH2 dominant immune system by increasing IL-2 and T cell counts... " Recommendation Thyroid Medications " Thyroxine (T4) found in Synthroid and desiccated thyroid is a thyroid hormone that increases TH1 cytokines to help balance the immune system... " Recommendation Vitamin E " Vitamin E increases TH1 cytokines, which help balance a TH2 dominant immune system... " Recommendation LDN - Low Dose Naltrexone " Low doses of Naltrexone can help reduce TH2 cytokines to assist in balancing the immune system... " Low T-Helper (CD4) Cell Level The Condition " ...Each cytokine regulates a different set of cells, suppressing the growth of some and stimulating the growth of others... " Poor/Slow Wound Healing The Condition " ...There is hope that we are on the eve of learning how to manipulate growth factors, as well as cytokines, to control wound healing, improving function and aesthetics... " Soil Based Organisms As A Treatment " ...SBOs cause a favorable shift in the TH1/TH2 balance... " TMG (Tri-methyl-glycine) As A Treatment " ...Applications include Immune modulation: Improves antibody response, enhances B- and T-cell function, and regulates cytokines... " Weakened Immune System The Condition " ...These cells often depend on the T-helper subset for activation signals in the form of secretions formally known as cytokines, lymphokines, or more specifically interleukins... " Recommendation Elderberry (Sambucus nigra) " ...Infected cells produce interferons and other cytokines (soluble components that are largely responsible for regulating the immune response to viruses), which can signal adjacent uninfected cells to mount their defenses, enabling uninfected cells... " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2009 Report Share Posted September 22, 2009 Dear fellow parents.  I had an idea and wanted to check with other parents to see what they think.. A lot of us on this group are using Imunovir because the medical community has failed us and has not admitted/paid attention to the fact that our kids being diagnosed with autism are not the same as cases of autism years ago due to neuroimmune disease. We do not have the appropriate medicine to adequately treat our children.  I was thinking about attention was paid to those who were/are suffering from AIDS. Over the years, although I am not an expert, it seems like great strides have been made in the treatment of this disease and unless I am wrong, the fatality rate is much lower than when this disease first arrived on the scene. I know that there are probably a lot of nonprofit foundations that over the years have raised money for research. For a lot of reasons, money was poured into this research. With all due respect to anyone suffering from AIDS, why can't this happen for our kids?  My question for this group is what if we created a Neuroimmune Foundation, nonprofit where we can get the word out and raise money for research? It may take time to be as sucessful as other nonprofits, but is it worth trying?Can we use similiar tactics? Does anyone know how to do this?  I don't know anything about how to run a nonprofit or what made the AIDS research so sucessful, but I would be open to being a part of doing what we can so that we can raise money.  I am not sure if this is a crazy idea, but please let me know what you think.  Thank-you.  Lynn  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2009 Report Share Posted September 24, 2009 I think it's a great idea, but I think it first has to be proven that is a 'real' disease. 1000s are still dying from AIDS in African countries, if I'm not mistaken ;-( Kristy From: [mailto: ] On Behalf Of Lynn Capone Sent: Tuesday, September 22, 2009 6:21 AM ; office@... Subject: Immune Modulators Dear fellow parents. I had an idea and wanted to check with other parents to see what they think.. A lot of us on this group are using Imunovir because the medical community has failed us and has not admitted/paid attention to the fact that our kids being diagnosed with autism are not the same as cases of autism years ago due to neuroimmune disease. We do not have the appropriate medicine to adequately treat our children. I was thinking about attention was paid to those who were/are suffering from AIDS. Over the years, although I am not an expert, it seems like great strides have been made in the treatment of this disease and unless I am wrong, the fatality rate is much lower than when this disease first arrived on the scene. I know that there are probably a lot of nonprofit foundations that over the years have raised money for research. For a lot of reasons, money was poured into this research. With all due respect to anyone suffering from AIDS, why can't this happen for our kids? My question for this group is what if we created a Neuroimmune Foundation, nonprofit where we can get the word out and raise money for research? It may take time to be as sucessful as other nonprofits, but is it worth trying?Can we use similiar tactics? Does anyone know how to do this? I don't know anything about how to run a nonprofit or what made the AIDS research so sucessful, but I would be open to being a part of doing what we can so that we can raise money. I am not sure if this is a crazy idea, but please let me know what you think. Thank-you. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2009 Report Share Posted September 24, 2009 I think Dr. Goldberg has done a very good job of proving that point. Also, if there is interest in doing this, it takes time to get a foundation established, so I think we would have to right away.  It seems that Dr. Goldberg has been using various available medications to try to regulate our kids, but what keeps me up at night is the question of what is going to happen to my son when I am not around or Dr. Goldberg. This is why we need these modulators in my opinion, to have an established medication to treat this illness the same as how we have established medications to treat diabetes, for example.  I also think that there a limited ways in raising money, but having a foundation would help and if there is also anyone on the list with any experience in getting grants from the government that will help.  I have to admit that I do not have any experience in these areas, but I am hands on and if there is a group willing to work on this, I will to everything I can.  Take care. Lynn From: Kristy Nardini <knardini@...> Subject: RE: Immune Modulators , office@... Date: Thursday, September 24, 2009, 5:39 AM  I think it's a great idea, but I think it first has to be proven that is a 'real' disease. 1000s are still dying from AIDS in African countries, if I'm not mistaken ;-( Kristy From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Lynn Capone Sent: Tuesday, September 22, 2009 6:21 AM groups (DOT) com; office@neuroimmuned r.com Subject: Immune Modulators Dear fellow parents. I had an idea and wanted to check with other parents to see what they think.. A lot of us on this group are using Imunovir because the medical community has failed us and has not admitted/paid attention to the fact that our kids being diagnosed with autism are not the same as cases of autism years ago due to neuroimmune disease. We do not have the appropriate medicine to adequately treat our children. I was thinking about attention was paid to those who were/are suffering from AIDS. Over the years, although I am not an expert, it seems like great strides have been made in the treatment of this disease and unless I am wrong, the fatality rate is much lower than when this disease first arrived on the scene. I know that there are probably a lot of nonprofit foundations that over the years have raised money for research. For a lot of reasons, money was poured into this research. With all due respect to anyone suffering from AIDS, why can't this happen for our kids? My question for this group is what if we created a Neuroimmune Foundation, nonprofit where we can get the word out and raise money for research? It may take time to be as sucessful as other nonprofits, but is it worth trying?Can we use similiar tactics? Does anyone know how to do this? I don't know anything about how to run a nonprofit or what made the AIDS research so sucessful, but I would be open to being a part of doing what we can so that we can raise money. I am not sure if this is a crazy idea, but please let me know what you think. Thank-you. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2009 Report Share Posted September 24, 2009 Me, too! ________________________________ From: Kristy Nardini <knardini@...> ; office@... Sent: Thursday, September 24, 2009 2:39:56 AM Subject: RE: Immune Modulators I think it's a great idea, but I think it first has to be proven that is a 'real' disease. 1000s are still dying from AIDS in African countries, if I'm not mistaken ;-( Kristy From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Lynn Capone Sent: Tuesday, September 22, 2009 6:21 AM groups (DOT) com; office@neuroimmuned r.com Subject: Immune Modulators Dear fellow parents. I had an idea and wanted to check with other parents to see what they think.. A lot of us on this group are using Imunovir because the medical community has failed us and has not admitted/paid attention to the fact that our kids being diagnosed with autism are not the same as cases of autism years ago due to neuroimmune disease. We do not have the appropriate medicine to adequately treat our children. I was thinking about attention was paid to those who were/are suffering from AIDS. Over the years, although I am not an expert, it seems like great strides have been made in the treatment of this disease and unless I am wrong, the fatality rate is much lower than when this disease first arrived on the scene. I know that there are probably a lot of nonprofit foundations that over the years have raised money for research. For a lot of reasons, money was poured into this research. With all due respect to anyone suffering from AIDS, why can't this happen for our kids? My question for this group is what if we created a Neuroimmune Foundation, nonprofit where we can get the word out and raise money for research? It may take time to be as sucessful as other nonprofits, but is it worth trying?Can we use similiar tactics? Does anyone know how to do this? I don't know anything about how to run a nonprofit or what made the AIDS research so sucessful, but I would be open to being a part of doing what we can so that we can raise money. I am not sure if this is a crazy idea, but please let me know what you think. Thank-you. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2009 Report Share Posted September 24, 2009 I think it¹s a great idea but, there must be a lot of public attention brought to to this that maybe we will get after the research comes out in October. Perhaps there will be a lot of attention paid and public outcry which will then get governmental dollars that can be given to labs to study this. Kinda like with AIDS. Because of all of the attention that AIDS got  there is MASSIVE government funding for AIDS related projects. I know people who work in labs and it¹s a known fact that in order to $$ you must be studying something AIDS related and most labs do because there is funding for it. That¹s why its¹ such a shame that things like HHV6 and other viral issues are not getting studies because there is a lack of funding. However, it¹s not that it can¹t be done  it could and then you could grant money to labs to study this. Laureen On 9/24/09 10:49 AM, " Robyn & Greg Coggins " <rngcoggs@...> wrote: > > > > > Me, too! > > ________________________________ > From: Kristy Nardini <knardini@... > <mailto:knardini%40roadrunner.com> > > <mailto:%40> ; > office@... <mailto:office%40neuroimmunedr.com> > Sent: Thursday, September 24, 2009 2:39:56 AM > Subject: RE: Immune Modulators > > I think it's a great idea, but I think it first has to be proven that > is a 'real' disease. > > 1000s are still dying from AIDS in African countries, if I'm not mistaken > ;-( > > Kristy > > From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Lynn > Capone > Sent: Tuesday, September 22, 2009 6:21 AM > groups (DOT) com; office@neuroimmuned r.com > Subject: Immune Modulators > > Dear fellow parents. > > I had an idea and wanted to check with other parents to see what they > think.. A lot of us on this group are using Imunovir because the medical > community has failed us and has not admitted/paid attention to the fact that > our kids being diagnosed with autism are not the same as cases of autism > years ago due to neuroimmune disease. We do not have the appropriate > medicine to adequately treat our children. > > I was thinking about attention was paid to those who were/are suffering from > AIDS. Over the years, although I am not an expert, it seems like great > strides have been made in the treatment of this disease and unless I am > wrong, the fatality rate is much lower than when this disease first arrived > on the scene. I know that there are probably a lot of nonprofit foundations > that over the years have raised money for research. For a lot of reasons, > money was poured into this research. With all due respect to anyone > suffering from AIDS, why can't this happen for our kids? > > My question for this group is what if we created a Neuroimmune Foundation, > nonprofit where we can get the word out and raise money for research? It may > take time to be as sucessful as other nonprofits, but is it worth trying?Can > we use similiar tactics? Does anyone know how to do this? > > I don't know anything about how to run a nonprofit or what made the AIDS > research so sucessful, but I would be open to being a part of doing what we > can so that we can raise money. > > I am not sure if this is a crazy idea, but please let me know what you > think. > > Thank-you. > > Lynn > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Laureen, what kind of research is coming out in October? On Sep 24, 2009, at 1:21 PM, Laureen Forman wrote: > I think it’s a great idea but, there must be a lot of public attention > brought to to this that maybe we will get after the research > comes out > in October. Perhaps there will be a lot of attention paid and public > outcry > which will then get governmental dollars that can be given to labs > to study > this. Kinda like with AIDS. > > Because of all of the attention that AIDS got – there is MASSIVE > government > funding for AIDS related projects. I know people who work in labs > and it’s > a known fact that in order to $$ you must be studying something AIDS > related > and most labs do because there is funding for it. That’s why its’ > such a > shame that things like HHV6 and other viral issues are not getting > studies > because there is a lack of funding. > > However, it’s not that it can’t be done – it could and then you > could grant > money to labs to study this. > > Laureen > > On 9/24/09 10:49 AM, " Robyn & Greg Coggins " <rngcoggs@...> > wrote: > > > > > > > > > > > Me, too! > > > > ________________________________ > > From: Kristy Nardini <knardini@... > > <mailto:knardini%40roadrunner.com> > > > <mailto:%40> ; > > office@... <mailto:office%40neuroimmunedr.com> > > Sent: Thursday, September 24, 2009 2:39:56 AM > > Subject: RE: Immune Modulators > > > > I think it's a great idea, but I think it first has to be proven > that > > is a 'real' disease. > > > > 1000s are still dying from AIDS in African countries, if I'm not > mistaken > > ;-( > > > > Kristy > > > > From: groups (DOT) com [mailto:groups (DOT) com] On > Behalf Of Lynn > > Capone > > Sent: Tuesday, September 22, 2009 6:21 AM > > groups (DOT) com; office@neuroimmuned r.com > > Subject: Immune Modulators > > > > Dear fellow parents. > > > > I had an idea and wanted to check with other parents to see what > they > > think.. A lot of us on this group are using Imunovir because the > medical > > community has failed us and has not admitted/paid attention to the > fact that > > our kids being diagnosed with autism are not the same as cases of > autism > > years ago due to neuroimmune disease. We do not have the appropriate > > medicine to adequately treat our children. > > > > I was thinking about attention was paid to those who were/are > suffering from > > AIDS. Over the years, although I am not an expert, it seems like > great > > strides have been made in the treatment of this disease and unless > I am > > wrong, the fatality rate is much lower than when this disease > first arrived > > on the scene. I know that there are probably a lot of nonprofit > foundations > > that over the years have raised money for research. For a lot of > reasons, > > money was poured into this research. With all due respect to anyone > > suffering from AIDS, why can't this happen for our kids? > > > > My question for this group is what if we created a Neuroimmune > Foundation, > > nonprofit where we can get the word out and raise money for > research? It may > > take time to be as sucessful as other nonprofits, but is it worth > trying?Can > > we use similiar tactics? Does anyone know how to do this? > > > > I don't know anything about how to run a nonprofit or what made > the AIDS > > research so sucessful, but I would be open to being a part of > doing what we > > can so that we can raise money. > > > > I am not sure if this is a crazy idea, but please let me know what > you > > think. > > > > Thank-you. > > > > Lynn > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Dr G did not tell me what - just that it is coming out and hes very excited about it. I'm sure he's under a strict confidentiality agreement so he could not say what. Laureen On Sep 25, 2009, at 10:58 AM, Argie Olivo <golivo@...> wrote: > Laureen, what kind of research is coming out in October? > On Sep 24, 2009, at 1:21 PM, Laureen Forman wrote: > >> I think it’s a great idea but, there must be a lot of public atten >> tion >> brought to to this that maybe we will get after the research >> comes out >> in October. Perhaps there will be a lot of attention paid and public >> outcry >> which will then get governmental dollars that can be given to labs >> to study >> this. Kinda like with AIDS. >> >> Because of all of the attention that AIDS got – there is MASSIVE >> government >> funding for AIDS related projects. I know people who work in labs >> and it’s >> a known fact that in order to $$ you must be studying something AIDS >> related >> and most labs do because there is funding for it. That’s why its’ >> such a >> shame that things like HHV6 and other viral issues are not getting >> studies >> because there is a lack of funding. >> >> However, it’s not that it can’t be done – it could and then you >> could grant >> money to labs to study this. >> >> Laureen >> >> On 9/24/09 10:49 AM, " Robyn & Greg Coggins " <rngcoggs@...> >> wrote: >> >>> >>> >>> >>> >>> Me, too! >>> >>> ________________________________ >>> From: Kristy Nardini <knardini@... >>> <mailto:knardini%40roadrunner.com> > >>> <mailto:%40> ; >>> office@... <mailto:office%40neuroimmunedr.com> >>> Sent: Thursday, September 24, 2009 2:39:56 AM >>> Subject: RE: Immune Modulators >>> >>> I think it's a great idea, but I think it first has to be proven >> that >>> is a 'real' disease. >>> >>> 1000s are still dying from AIDS in African countries, if I'm not >> mistaken >>> ;-( >>> >>> Kristy >>> >>> From: groups (DOT) com [mailto:groups (DOT) com] On >> Behalf Of Lynn >>> Capone >>> Sent: Tuesday, September 22, 2009 6:21 AM >>> groups (DOT) com; office@neuroimmuned r.com >>> Subject: Immune Modulators >>> >>> Dear fellow parents. >>> >>> I had an idea and wanted to check with other parents to see what >> they >>> think.. A lot of us on this group are using Imunovir because the >> medical >>> community has failed us and has not admitted/paid attention to the >> fact that >>> our kids being diagnosed with autism are not the same as cases of >> autism >>> years ago due to neuroimmune disease. We do not have the appropriate >>> medicine to adequately treat our children. >>> >>> I was thinking about attention was paid to those who were/are >> suffering from >>> AIDS. Over the years, although I am not an expert, it seems like >> great >>> strides have been made in the treatment of this disease and unless >> I am >>> wrong, the fatality rate is much lower than when this disease >> first arrived >>> on the scene. I know that there are probably a lot of nonprofit >> foundations >>> that over the years have raised money for research. For a lot of >> reasons, >>> money was poured into this research. With all due respect to anyone >>> suffering from AIDS, why can't this happen for our kids? >>> >>> My question for this group is what if we created a Neuroimmune >> Foundation, >>> nonprofit where we can get the word out and raise money for >> research? It may >>> take time to be as sucessful as other nonprofits, but is it worth >> trying?Can >>> we use similiar tactics? Does anyone know how to do this? >>> >>> I don't know anything about how to run a nonprofit or what made >> the AIDS >>> research so sucessful, but I would be open to being a part of >> doing what we >>> can so that we can raise money. >>> >>> I am not sure if this is a crazy idea, but please let me know what >> you >>> think. >>> >>> Thank-you. >>> >>> Lynn >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Dr. G's been alluding to some important research being released in October. He couldn't really divulge more than that! ________________________________ From: Argie Olivo <golivo@...> Sent: Friday, September 25, 2009 10:58:41 AM Subject: Re: Immune Modulators Laureen, what kind of research is coming out in October? On Sep 24, 2009, at 1:21 PM, Laureen Forman wrote: > I think it’s a great idea but, there must be a lot of public attention > brought to to this that maybe we will get after the research > comes out > in October. Perhaps there will be a lot of attention paid and public > outcry > which will then get governmental dollars that can be given to labs > to study > this. Kinda like with AIDS. > > Because of all of the attention that AIDS got – there is MASSIVE > government > funding for AIDS related projects. I know people who work in labs > and it’s > a known fact that in order to $$ you must be studying something AIDS > related > and most labs do because there is funding for it. That’s why its’ > such a > shame that things like HHV6 and other viral issues are not getting > studies > because there is a lack of funding. > > However, it’s not that it can’t be done – it could and then you > could grant > money to labs to study this. > > Laureen > > On 9/24/09 10:49 AM, " Robyn & Greg Coggins " <rngcoggs@...> > wrote: > > > > > > > > > > > Me, too! > > > > ________________________________ > > From: Kristy Nardini <knardini@... > > <mailto:knardini%40roadrunner.com> > > > <mailto:%40> ; > > office@... <mailto:office%40neuroimmunedr.com> > > Sent: Thursday, September 24, 2009 2:39:56 AM > > Subject: RE: Immune Modulators > > > > I think it's a great idea, but I think it first has to be proven > that > > is a 'real' disease. > > > > 1000s are still dying from AIDS in African countries, if I'm not > mistaken > > ;-( > > > > Kristy > > > > From: groups (DOT) com [mailto:groups (DOT) com] On > Behalf Of Lynn > > Capone > > Sent: Tuesday, September 22, 2009 6:21 AM > > groups (DOT) com; office@neuroimmuned r.com > > Subject: Immune Modulators > > > > Dear fellow parents. > > > > I had an idea and wanted to check with other parents to see what > they > > think.. A lot of us on this group are using Imunovir because the > medical > > community has failed us and has not admitted/paid attention to the > fact that > > our kids being diagnosed with autism are not the same as cases of > autism > > years ago due to neuroimmune disease. We do not have the appropriate > > medicine to adequately treat our children. > > > > I was thinking about attention was paid to those who were/are > suffering from > > AIDS. Over the years, although I am not an expert, it seems like > great > > strides have been made in the treatment of this disease and unless > I am > > wrong, the fatality rate is much lower than when this disease > first arrived > > on the scene. I know that there are probably a lot of nonprofit > foundations > > that over the years have raised money for research. For a lot of > reasons, > > money was poured into this research. With all due respect to anyone > > suffering from AIDS, why can't this happen for our kids? > > > > My question for this group is what if we created a Neuroimmune > Foundation, > > nonprofit where we can get the word out and raise money for > research? It may > > take time to be as sucessful as other nonprofits, but is it worth > trying?Can > > we use similiar tactics? Does anyone know how to do this? > > > > I don't know anything about how to run a nonprofit or what made > the AIDS > > research so sucessful, but I would be open to being a part of > doing what we > > can so that we can raise money. > > > > I am not sure if this is a crazy idea, but please let me know what > you > > think. > > > > Thank-you. > > > > Lynn > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Lynn-I agree with you. Dr. Goldberg has known that our kids have an illness that can be cured with the agents-immune modulators. We may be getting some help with this in the near future when a study will be published proving that our kids do have a disease and not a developmental disability. Our kids deserve to have?the same?chance at a future as some of Dr. Goldberg's recovered patients and, hopefully this study will bring us closer to these immune modulator agents. Immune Modulators Dear fellow parents. I had an idea and wanted to check with other parents to see what they think.. A lot of us on this group are using Imunovir because the medical community has failed us and has not admitted/paid attention to the fact that our kids being diagnosed with autism are not the same as cases of autism years ago due to neuroimmune disease. We do not have the appropriate medicine to adequately treat our children. I was thinking about attention was paid to those who were/are suffering from AIDS. Over the years, although I am not an expert, it seems like great strides have been made in the treatment of this disease and unless I am wrong, the fatality rate is much lower than when this disease first arrived on the scene. I know that there are probably a lot of nonprofit foundations that over the years have raised money for research. For a lot of reasons, money was poured into this research. With all due respect to anyone suffering from AIDS, why can't this happen for our kids? My question for this group is what if we created a Neuroimmune Foundation, nonprofit where we can get the word out and raise money for research? It may take time to be as sucessful as other nonprofits, but is it worth trying?Can we use similiar tactics? Does anyone know how to do this? I don't know anything about how to run a nonprofit or what made the AIDS research so sucessful, but I would be open to being a part of doing what we can so that we can raise money. I am not sure if this is a crazy idea, but please let me know what you think. Thank-you. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 Yes, it is research  nothing about the immune modulators. I thinks it something that will prove our kids are physically sick. Laureen On 9/28/09 12:14 PM, " NOEL SCHNEIDER " <schneid99@...> wrote: > > > > > Thank you.... > >  Sincerely Noel > > >>> >> >>>> >>> >>>> >>> >>>> >>> >>>> >>> >>>> >>> Me, too! >>>> >>> >>>> >>> ____________ _________ _________ __ >>>> >>> From: Kristy Nardini <knardini@roadrunne r .com >>>> >>> <mailto:knardini% 40roadrunner. com> > >>>> >>> groups (DOT) com <mailto:% 40groups. com> ; >>>> >>> office@neuroimmuned r.com <mailto:office% 40neuroimmunedr. com> >>>> >>> Sent: Thursday, September 24, 2009 2:39:56 AM >>>> >>> Subject: RE: Immune Modulators >>>> >>> >>>> >>> I think it's a great idea, but I think it first has to be proven >>> >> that >>>> >>> is a 'real' disease. >>>> >>> >>>> >>> 1000s are still dying from AIDS in African countries, if I'm not >>> >> mistaken >>>> >>> ;-( >>>> >>> >>>> >>> Kristy >>>> >>> >>>> >>> From: groups (DOT) com [mailto:] On >>> >> Behalf Of Lynn >>>> >>> Capone >>>> >>> Sent: Tuesday, September 22, 2009 6:21 AM >>>> >>> groups (DOT) com; office@neuroimmuned r.com >>>> >>> Subject: Immune Modulators >>>> >>> >>>> >>> Dear fellow parents. >>>> >>> >>>> >>> I had an idea and wanted to check with other parents to see what >>> >> they >>>> >>> think.. A lot of us on this group are using Imunovir because the >>> >> medical >>>> >>> community has failed us and has not admitted/paid attention to the >>> >> fact that >>>> >>> our kids being diagnosed with autism are not the same as cases of >>> >> autism >>>> >>> years ago due to neuroimmune disease. We do not have the appropriate >>>> >>> medicine to adequately treat our children. >>>> >>> >>>> >>> I was thinking about attention was paid to those who were/are >>> >> suffering from >>>> >>> AIDS. Over the years, although I am not an expert, it seems like >>> >> great >>>> >>> strides have been made in the treatment of this disease and unless >>> >> I am >>>> >>> wrong, the fatality rate is much lower than when this disease >>> >> first arrived >>>> >>> on the scene. I know that there are probably a lot of nonprofit >>> >> foundations >>>> >>> that over the years have raised money for research. For a lot of >>> >> reasons, >>>> >>> money was poured into this research. With all due respect to anyone >>>> >>> suffering from AIDS, why can't this happen for our kids? >>>> >>> >>>> >>> My question for this group is what if we created a Neuroimmune >>> >> Foundation, >>>> >>> nonprofit where we can get the word out and raise money for >>> >> research? It may >>>> >>> take time to be as sucessful as other nonprofits, but is it worth >>> >> trying?Can >>>> >>> we use similiar tactics? Does anyone know how to do this? >>>> >>> >>>> >>> I don't know anything about how to run a nonprofit or what made >>> >> the AIDS >>>> >>> research so sucessful, but I would be open to being a part of >>> >> doing what we >>>> >>> can so that we can raise money. >>>> >>> >>>> >>> I am not sure if this is a crazy idea, but please let me know what >>> >> you >>>> >>> think. >>>> >>> >>>> >>> Thank-you. >>>> >>> >>>> >>> Lynn >>>> >>> >>>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 I am on board with this if anyone can give us a starting point. From: Lynn Capone <ecapne@...> Subject: Immune Modulators , office@... Date: Tuesday, September 22, 2009, 1:20 PM  Dear fellow parents.  I had an idea and wanted to check with other parents to see what they think... A lot of us on this group are using Imunovir because the medical community has failed us and has not admitted/paid attention to the fact that our kids being diagnosed with autism are not the same as cases of autism years ago due to neuroimmune disease. We do not have the appropriate medicine to adequately treat our children.  I was thinking about attention was paid to those who were/are suffering from AIDS. Over the years, although I am not an expert, it seems like great strides have been made in the treatment of this disease and unless I am wrong, the fatality rate is much lower than when this disease first arrived on the scene. I know that there are probably a lot of nonprofit foundations that over the years have raised money for research. For a lot of reasons, money was poured into this research. With all due respect to anyone suffering from AIDS, why can't this happen for our kids?  My question for this group is what if we created a Neuroimmune Foundation, nonprofit where we can get the word out and raise money for research? It may take time to be as sucessful as other nonprofits, but is it worth trying?Can we use similiar tactics? Does anyone know how to do this?  I don't know anything about how to run a nonprofit or what made the AIDS research so sucessful, but I would be open to being a part of doing what we can so that we can raise money.  I am not sure if this is a crazy idea, but please let me know what you think.  Thank-you.  Lynn  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2009 Report Share Posted October 4, 2009 Maybe if we can get a show of hands of who is interested. After this, we could probably come up with a plan. I think your ideas are great and also maybe anyone involved could pass on the information to their relatives and other listserves that they may be on.   I am interested. Lynn Tetrault On Tue, 9/29/09, momo3@... <momo3@...> wrote: From: momo3@... <momo3@...> Subject: Re: Immune Modulators Date: Tuesday, September 29, 2009, 10:59 PM  >I have been thinking a lot about how best to start a non-profit, what our mission statement would be, and what our first goal might look like. I have come up with a definite short term goal that would not only raise awareness but also maybe some money for research. The first thing that would need to get done besides paper work would be to establish a board of directors. These people would be in charge of regulating and setting up the by-laws for the non-profit. I have a friend that is a lawyer and he could help me do all of the paper work. I think it would be a good thing to make it a corporation and to get a tax exempt status. I think one of our goals should be to raise awareness. One of the biggest ways to do that is to talk about the statistics involved with a diagnoses of the " A " word. I think if we not only talk about but also what will happen to all of these kids if they don't get better we might get more attention. I recently went to an art exhibit by an artist named Jordan. His art work is a mix of social commentary and statistics. If we could get him to do some art work based on statistics and the " A " word and do an auction were all the proceeds go to our non-profit we could raise money and awareness at the same time. My husband is an event planner and I know he could get the event done for little or no cost. We also have friends in the industry and could maybe get some celebrities to come, which hopefully means press too. I would love to get feedback from any parents that think this is a good or bad idea. It will take more than one person to make this happen and would love to know who would be interested in taking this on. I would need volunteers for the board and also parents who are good at getting all the research and numbers together. Amber > Me, too! > > > > > ____________ _________ _________ __ > From: Kristy Nardini <knardini@.. .> > groups (DOT) com; office@... > Sent: Thursday, September 24, 2009 2:39:56 AM > Subject: RE: Immune Modulators > > > I think it's a great idea, but I think it first has to be proven that > is a 'real' disease. > > 1000s are still dying from AIDS in African countries, if I'm not mistaken > ;-( > > Kristy > > From: groups (DOT) com [mailto:] On Behalf Of Lynn > Capone > Sent: Tuesday, September 22, 2009 6:21 AM > groups (DOT) com; office@neuroimmuned r.com > Subject: Immune Modulators > > > Dear fellow parents. > > I had an idea and wanted to check with other parents to see what they > think.. A lot of us on this group are using Imunovir because the medical > community has failed us and has not admitted/paid attention to the fact that > our kids being diagnosed with autism are not the same as cases of autism > years ago due to neuroimmune disease. We do not have the appropriate > medicine to adequately treat our children. > > I was thinking about attention was paid to those who were/are suffering from > AIDS. Over the years, although I am not an expert, it seems like great > strides have been made in the treatment of this disease and unless I am > wrong, the fatality rate is much lower than when this disease first arrived > on the scene. I know that there are probably a lot of nonprofit foundations > that over the years have raised money for research. For a lot of reasons, > money was poured into this research. With all due respect to anyone > suffering from AIDS, why can't this happen for our kids? > > My question for this group is what if we created a Neuroimmune Foundation, > nonprofit where we can get the word out and raise money for research? It may > take time to be as sucessful as other nonprofits, but is it worth trying?Can > we use similiar tactics? Does anyone know how to do this? > > I don't know anything about how to run a nonprofit or what made the AIDS > research so sucessful, but I would be open to being a part of doing what we > can so that we can raise money. > > I am not sure if this is a crazy idea, but please let me know what you > think. > > Thank-you. > > Lynn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2009 Report Share Posted October 4, 2009 Hello Robin and Greg-We do need help getting Dr. Goldberg's message out to the Autism community, and if you have a connection to any celebrities in the industry, as you mentioned, it would be great if they could get involved in our efforts! We could band together as parents and with that kind of support, chances for our efforts would greatly improve. Gayle Immune Modulators > > > Dear fellow parents. > > I had an idea and wanted to check with other parents to see what they > think.. A lot of us on this group are using Imunovir because the medical > community has failed us and has not admitted/paid attention to the fact that > our kids being diagnosed with autism are not the same as cases of autism > years ago due to neuroimmune disease. We do not have the appropriate > medicine to adequately treat our children. > > I was thinking about attention was paid to those who were/are suffering from > AIDS. Over the years, although I am not an expert, it seems like great > strides have been made in the treatment of this disease and unless I am > wrong, the fatality rate is much lower than when this disease first arrived > on the scene. I know that there are probably a lot of nonprofit foundations > that over the years have raised money for research. For a lot of reasons, > money was poured into this research. With all due respect to anyone > suffering from AIDS, why can't this happen for our kids? > > My question for this group is what if we created a Neuroimmune Foundation, > nonprofit where we can get the word out and raise money for research? It may > take time to be as sucessful as other nonprofits, but is it worth trying?Can > we use similiar tactics? Does anyone know how to do this? > > I don't know anything about how to run a nonprofit or what made the AIDS > research so sucessful, but I would be open to being a part of doing what we > can so that we can raise money. > > I am not sure if this is a crazy idea, but please let me know what you > think. > > Thank-you. > > Lynn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2009 Report Share Posted October 4, 2009 I love the idea. I'm interested if the research that is supposedly coming out this month proves . If so, it will go a long way in supporting the type of foundation you're interested in. Kristy From: [mailto: ] On Behalf Of momo3@... Sent: Tuesday, September 29, 2009 7:59 PM Subject: Re: Immune Modulators >I have been thinking a lot about how best to start a non-profit, what our mission statement would be, and what our first goal might look like. I have come up with a definite short term goal that would not only raise awareness but also maybe some money for research. The first thing that would need to get done besides paper work would be to establish a board of directors. These people would be in charge of regulating and setting up the by-laws for the non-profit. I have a friend that is a lawyer and he could help me do all of the paper work. I think it would be a good thing to make it a corporation and to get a tax exempt status. I think one of our goals should be to raise awareness. One of the biggest ways to do that is to talk about the statistics involved with a diagnoses of the " A " word. I think if we not only talk about but also what will happen to all of these kids if they don't get better we might get more attention. I recently went to an art exhibit by an artist named Jordan. His art work is a mix of social commentary and statistics. If we could get him to do some art work based on statistics and the " A " word and do an auction were all the proceeds go to our non-profit we could raise money and awareness at the same time. My husband is an event planner and I know he could get the event done for little or no cost. We also have friends in the industry and could maybe get some celebrities to come, which hopefully means press too. I would love to get feedback from any parents that think this is a good or bad idea. It will take more than one person to make this happen and would love to know who would be interested in taking this on. I would need volunteers for the board and also parents who are good at getting all the research and numbers together. Amber > Me, too! > > > > > ________________________________ > From: Kristy Nardini <knardini@...> > <mailto:%40> ; office@... > Sent: Thursday, September 24, 2009 2:39:56 AM > Subject: RE: Immune Modulators > > > I think it's a great idea, but I think it first has to be proven that > is a 'real' disease. > > 1000s are still dying from AIDS in African countries, if I'm not mistaken > ;-( > > Kristy > > From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Lynn > Capone > Sent: Tuesday, September 22, 2009 6:21 AM > groups (DOT) com; office@neuroimmuned r.com > Subject: Immune Modulators > > > Dear fellow parents. > > I had an idea and wanted to check with other parents to see what they > think.. A lot of us on this group are using Imunovir because the medical > community has failed us and has not admitted/paid attention to the fact that > our kids being diagnosed with autism are not the same as cases of autism > years ago due to neuroimmune disease. We do not have the appropriate > medicine to adequately treat our children. > > I was thinking about attention was paid to those who were/are suffering from > AIDS. Over the years, although I am not an expert, it seems like great > strides have been made in the treatment of this disease and unless I am > wrong, the fatality rate is much lower than when this disease first arrived > on the scene. I know that there are probably a lot of nonprofit foundations > that over the years have raised money for research. For a lot of reasons, > money was poured into this research. With all due respect to anyone > suffering from AIDS, why can't this happen for our kids? > > My question for this group is what if we created a Neuroimmune Foundation, > nonprofit where we can get the word out and raise money for research? It may > take time to be as sucessful as other nonprofits, but is it worth trying?Can > we use similiar tactics? Does anyone know how to do this? > > I don't know anything about how to run a nonprofit or what made the AIDS > research so sucessful, but I would be open to being a part of doing what we > can so that we can raise money. > > I am not sure if this is a crazy idea, but please let me know what you > think. > > Thank-you. > > Lynn > > > Quote Link to comment Share on other sites More sharing options...
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