Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 I'm curious if there is an immunologist in Boston that you think highly of, who gets Autism and vax injury? Alison M RE:Goldberg> > > > > > > > > > > > > > > > > > I am a mother of a 5 year old daughter who has just started (3 months in) the > > > > >> > > > > > NIDS protocol with Dr Goldberg. We worked with 2 DAN doctors for 1.5 years > > > > >with > > > > >> > > > > > good results but hit a wall so to speak. > > > > > > > > > > > > > > > > > > When I wanted to try the virus protocol our DAN said OK gave us the meds a > > > > >piece > > > > >> > > > > > of paper with the info and said to us not much has been done in the virus > > > > >area > > > > >> > > > > > by the medical establishment and it does not work for most kids. Something > > > > >felt > > > > >> > > > > > wrong with her statement so I joined this site and was led to Dr Goldberg by > > > > >a > > > > >> > > > > > passionate mom (Marcia).> > > > > > > > > > > > That said when we first had our appt. I was somewhat taken aback by his take > > > > >on > > > > >> > > > > > DAN being the 'bad guys'. He went on about it for a little too long for my > > > > > > liking ... DAN was there for us when everybody else was saying go home and > > > > > > accept that is how your daughter is going to be. My 'bad guys' were the > > > > >standard > > > > >> > > > > > medical guys pushing the vaccines on my child with a severely and visible > > > > > > compromised immune system. I had to cut him short and say lets get back to > > > > >what > > > > >> > > > > > we came for, my fight is not with DAN but with healing my child. DAN bashing > > > > >as > > > > >> > > > > > I call it feels decidely uncomfortable for me, especially as they recovering > > > > >a > > > > >> > > > > > lot of of children, yes I do feel like because DAN are trying so many bases > > > > > > gut/metals/viral etc the doctors can throw a lot of things at us and for > > > > >those > > > > >> > > > > > of us struggling to study and grasp all the info out there we can tend to > > > > >rely > > > > >> > > > > > heavily on them for it all, hence over supplementing with the fear we are > > > > > > missing something or if we remove some they regress after all our hard won > > > > > > gains. I also think some of the DAN's are overloaded and good follow up > > > > > > proceedures are lacking in their offices. NIDS protocol does not spread > > > > >itself > > > > >> > > > > > so thin.> > > > > > > > > > > > That said Dr Goldberg is a doctor who takes healing your child seriously, > > > > >very > > > > >> > > > > > prepared and is not afraid to speak his mind and offend. I have accepted this > > > > >as > > > > >> > > > > > part of the deal working with him (who wants a wishy washy doctor healing > > > > >your > > > > >> > > > > > child anyway). He is always prepared for our telephone consults, knows my > > > > > > daughter history, and kicks my butt when I was too scared to start the SSRI' > > > > > > > > > > saying I am here to try and heal your child lets not waste time (my > > > > >words...his > > > > >> > > > > > were stronger).> > > > > > > > > > > > I think for many passionate caring doctors who have had great success in > > > > >their > > > > >> > > > > > specific protocols they feel strongly they can take ALL our children to > > > > > > recovery. Having read many a post on many a site I now know this is not so. > > > > >Our > > > > >> > > > > > children are all so different and their issues so variable it indeed may take > > > > >> > > > > > one to many more protocols to get there. > > > > > > > > > > > > > > > > > > Suffice to say we as parents have to stay on our toes and know when to stay > > > > >and > > > > >> > > > > > when to move on (Cheryl's advice to me...thks)....the hard part is knowing > > > > >what > > > > >> > > > > > to do when we are not doctors, just parents with a powerful love in our > > > > >hearts > > > > >> > > > > > to heal our kids and see them flourish in this world.> > > > > > > > > > > > Lindy> > > > > > > > > > > > PS. We have been on the SSRI's for 9 days and the results have been nothing > > > > > > short of amazing for my daughter. We are holding our breaths as we saw > > > > >similar > > > > >> > > > > > results with HBOT which did not hold. Right now I am glad Dr G kicked my > > > > >butt.> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 Wow, I don't think my Dan would go that high. I wonder if I added a bunch together like acyclovir, immunovir, and Ldm-100 if that would work?Rhonda Masengale The problem with Valtrex for Herpes in the brain vs else were is the blood brain barrier. The recommended dosage for herpes from Glaxo is a theraputic dosage that dose not take in consideration that only a very small percentage actually reaches the infection if it is truly in the frontal lob. We took it once daily before Dr G with no effect then at three times the recommended dosage with temporary success but in reality we were not truly successful until we went to acyclovir at 800 mg 5 time daily. The blood brain barrier prevents Valtrex from being effective under CDC guide lines and most DAN doc's depend on this for liability reasons. If you have tried Valtex once daily you probably did not see results! Meds designed for HIV are dosed at a much higher dosage and are designed to reach the nervous system.To: "mb12 valtrex " <mb12 valtrex >Sent: Tue, August 17, 2010 5:07:24 PMSubject: Re: Re: Jackie::RE:Goldberg I find this very interesting b/c my son responded to valtrex in 08 very well but our new Dan took them off b/c he didn't know enough about the protocol. Both boys slid backwards, BAD! I put my son back on it recently and see nothing so far but his allergies are worse now than back then. I wonder if he is not responding due to severity of allergies? Hummmm. He is also on an immune suppressor for his gut right now. I guess that wouldn't help him get his immune system better? What do you think?Rhonda Masengale Great post. Have heard heard of stopcallingitautism.com? Your experience could greatly help their cause. Check it out when you have a few : ) Best wishes to you and your family! So happy to hear you're having success!-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 10:43:38 AMSubject: Re: Re: Jackie::RE:Goldberg Allow me to introduce myself, I am Bill Klimas, the father of a son that was classically Autistic and is now a twelve year old on his way to recovery. We are on the NIDS protocol but I did not find it on any list. My son Connors aunt is Dr Klimas, chairman of the immunology department at U of Miami school of medicine and a highly recognized researcher in CSF and related immune based illnesses. After several years of GF/CF diet and tens of thousands of dollars spent on behavioral therapy co-payments, supplements and such to NO progress, she convinced me to work on his immune system and we went the NIDS route. Three years ago on his initial work up his ASO were 450+, his viral tiers were 875+ and so on. It has been an up and down but what I found most convincing that the bases of Autism is an immune dysfunction happened last summer. We had managed to slowly drive down the HHV6 (to 1/40) and ASO (Normal range) numbers using antivirals and antibiotics and saw amazing results, last June my wife started a diet that allowed fresh pineapple and Connor loved it. within a week we saw regression to the worst he has ever been. We had scheduled blood draws the following week and Connors HHV6 had jumped to 1-240 among other off the scale makers. No change in meds just he introduction of an very strong allergin. It was wild but by triggering an immune reaction the antivirals were rendered useless. It took nearly a month t calm his system and him back down and nearly two months to drive the HHV6 back to 1-80.During the XMRV debate I found this quote from a noted immunologist and it just makes sense."There are two broad aspects to the immune system, TH1 and TH2. TH1 involves Natural Killer (NK) cells whose job it is to identify and destroy viruses. The TH2 side of the immune system involves, amongst other things, antibodies which respond to threats. There is evidence in the literature that patients with ME/CFS are “TH2†biased, i.e. the TH2 aspect of the immune system is over-activated, causing suppression of the TH1 side and high levels of inflammatory cytokines; patients have lower Natural Killer (NK) cell immunity. This bias may mean that opportunistic viruses and bacterial infections can no longer be kept at bay effectively by the TH1 side of the system.RNase L conducts a function of holding the virus at bay until NK cells are available to eradicate the pathogen, however even the RNase L’s ability to perform this function can be compromised over time if TH2 dominates for too long. RNase L dysfunction was also reported in the prostate cancer cases of XMRV, although later research has not found a genetic link. In ME/CFS, any suspected Rnase L deficiency many simply be due to chronic TH2 dominance. If TH2 dominates for too long, it can be hypothesised that viruses such as HHV-6, Epstein Barr Virus (EBV), CMV and Parvovirus B19 can flourish, as well as bacterial infections such as mycoplasma and chlamydia pneumonia. It has been established that the majority of neurodegenerative disease, fatiguing illnesses and neurobehavioral disease patients have chronic bacterial and viral infections. (3). In fact the WPI research claimed to have found higher levels of XMRA in “atypical†MS and Autism. "I am not a medical doctor but Connor was always low iron low potassium and so on. As his immune system normalized all of these returned to normal including B12.To: mb12 valtrex Sent: Tue, August 17, 2010 9:26:18 AMSubject: Re: Jackie::RE:Goldberg Jackie, Thrilled to hear about your son's progress! SO happy for you guys. best, sloan > > > > > > > > Jackie, You have a heavy duty resume--please one I have been at this for three > > > > years and not done all you have--question, how does Dr G. get the hvy metals > > > > out of the body if he does not do chelation? Please I am very interested. > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > From: jcatalahana <jcataly@> > > > > To: mb12 valtrex > > > > Sent: Sun, August 15, 2010 7:50:58 PM > > > > Subject: Re: RE:Goldberg > > > > > > > >  > > > > I too must chime in and speak personally for myself and our experience. We have > > > > done DAN (everything DAN had to offer we did it), Krisgman and Gupta for five > > > > years including Yasko, two stem cells treatments, oh yeah, and we even bought > > > > our own HARD Chamber and did countless hours of HBOT per our DAN's > > > > recommendation. None of this has come clo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 How much did your son weigh at tat dose? Was he on it for very long?Rhonda Masengale The problem with Valtrex for Herpes in the brain vs else were is the blood brain barrier. The recommended dosage for herpes from Glaxo is a theraputic dosage that dose not take in consideration that only a very small percentage actually reaches the infection if it is truly in the frontal lob. We took it once daily before Dr G with no effect then at three times the recommended dosage with temporary success but in reality we were not truly successful until we went to acyclovir at 800 mg 5 time daily. The blood brain barrier prevents Valtrex from being effective under CDC guide lines and most DAN doc's depend on this for liability reasons. If you have tried Valtex once daily you probably did not see results! Meds designed for HIV are dosed at a much higher dosage and are designed to reach the nervous system.To: "mb12 valtrex " <mb12 valtrex >Sent: Tue, August 17, 2010 5:07:24 PMSubject: Re: Re: Jackie::RE:Goldberg I find this very interesting b/c my son responded to valtrex in 08 very well but our new Dan took them off b/c he didn't know enough about the protocol. Both boys slid backwards, BAD! I put my son back on it recently and see nothing so far but his allergies are worse now than back then. I wonder if he is not responding due to severity of allergies? Hummmm. He is also on an immune suppressor for his gut right now. I guess that wouldn't help him get his immune system better? What do you think?Rhonda Masengale Great post. Have heard heard of stopcallingitautism.com? Your experience could greatly help their cause. Check it out when you have a few : ) Best wishes to you and your family! So happy to hear you're having success!-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 10:43:38 AMSubject: Re: Re: Jackie::RE:Goldberg Allow me to introduce myself, I am Bill Klimas, the father of a son that was classically Autistic and is now a twelve year old on his way to recovery. We are on the NIDS protocol but I did not find it on any list. My son Connors aunt is Dr Klimas, chairman of the immunology department at U of Miami school of medicine and a highly recognized researcher in CSF and related immune based illnesses. After several years of GF/CF diet and tens of thousands of dollars spent on behavioral therapy co-payments, supplements and such to NO progress, she convinced me to work on his immune system and we went the NIDS route. Three years ago on his initial work up his ASO were 450+, his viral tiers were 875+ and so on. It has been an up and down but what I found most convincing that the bases of Autism is an immune dysfunction happened last summer. We had managed to slowly drive down the HHV6 (to 1/40) and ASO (Normal range) numbers using antivirals and antibiotics and saw amazing results, last June my wife started a diet that allowed fresh pineapple and Connor loved it. within a week we saw regression to the worst he has ever been. We had scheduled blood draws the following week and Connors HHV6 had jumped to 1-240 among other off the scale makers. No change in meds just he introduction of an very strong allergin. It was wild but by triggering an immune reaction the antivirals were rendered useless. It took nearly a month t calm his system and him back down and nearly two months to drive the HHV6 back to 1-80.During the XMRV debate I found this quote from a noted immunologist and it just makes sense."There are two broad aspects to the immune system, TH1 and TH2. TH1 involves Natural Killer (NK) cells whose job it is to identify and destroy viruses. The TH2 side of the immune system involves, amongst other things, antibodies which respond to threats. There is evidence in the literature that patients with ME/CFS are “TH2†biased, i.e. the TH2 aspect of the immune system is over-activated, causing suppression of the TH1 side and high levels of inflammatory cytokines; patients have lower Natural Killer (NK) cell immunity. This bias may mean that opportunistic viruses and bacterial infections can no longer be kept at bay effectively by the TH1 side of the system.RNase L conducts a function of holding the virus at bay until NK cells are available to eradicate the pathogen, however even the RNase L’s ability to perform this function can be compromised over time if TH2 dominates for too long. RNase L dysfunction was also reported in the prostate cancer cases of XMRV, although later research has not found a genetic link. In ME/CFS, any suspected Rnase L deficiency many simply be due to chronic TH2 dominance. If TH2 dominates for too long, it can be hypothesised that viruses such as HHV-6, Epstein Barr Virus (EBV), CMV and Parvovirus B19 can flourish, as well as bacterial infections such as mycoplasma and chlamydia pneumonia. It has been established that the majority of neurodegenerative disease, fatiguing illnesses and neurobehavioral disease patients have chronic bacterial and viral infections. (3). In fact the WPI research claimed to have found higher levels of XMRA in “atypical†MS and Autism. "I am not a medical doctor but Connor was always low iron low potassium and so on. As his immune system normalized all of these returned to normal including B12.To: mb12 valtrex Sent: Tue, August 17, 2010 9:26:18 AMSubject: Re: Jackie::RE:Goldberg Jackie, Thrilled to hear about your son's progress! SO happy for you guys. best, sloan > > > > > > > > Jackie, You have a heavy duty resume--please one I have been at this for three > > > > years and not done all you have--question, how does Dr G. get the hvy metals > > > > out of the body if he does not do chelation? Please I am very interested. > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > From: jcatalahana <jcataly@> > > > > To: mb12 valtrex > > > > Sent: Sun, August 15, 2010 7:50:58 PM > > > > Subject: Re: RE:Goldberg > > > > > > > >  > > > > I too must chime in and speak personally for myself and our experience. We have > > > > done DAN (everything DAN had to offer we did it), Krisgman and Gupta for five > > > > years including Yasko, two stem cells treatments, oh yeah, and we even bought > > > > our own HARD Chamber and did countless hours of HBOT per our DAN's > > > > recommendation. None of this has come clo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 well that is the very thing that just makes me crazy. Western docs freaking out at parents taking matters into their own hands but we are left with no other choice if we ever expect our children to be well. My sons' own pediatrician refused to run any tests. Not one. Even in light of our family history. I guess that was the part where I was supposed to take my son home and allow him to live out the rest of his life unwell because our medical industry is dragging their feet. Some of us do not have the money, resources or luck to continually search out a doctor who actually cares enough to help us try to figure things out. Those are few and far between. Even my old pediatrician - a close friend of my dad - told me in a nutshell as gently as he could to do what I can for son's adhd symptoms - but as far as his more severe spectrum symptoms to just accept it for what it is. What choice are we left?? : (-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 4:30:25 PMSubject: Re: Re: Jackie::RE:Goldberg I wrote the opening page of the SCIA group description, I was a founding board member. I believe that immune issues need to be very closely monitored by proactive board certified immunologists in order to not risk harm to children. The SCIA's position to support parents playing internet doctors without the needed back round has forced me to step away. Immune issues require an understanding beyond a wikipedia education and desperation drives parents (especially new bees) to taking risks that far outweigh benefits of parent developed protocols based on an internet salesmanship offer! Poor medicine and greed made my kid sick. I will not turn to the same mentality to cure him. Don't get me wrong, knowledge is the solution but it is very important to consider the source. Unfortunately the SCIA promotes self diagnosis and often discusses treatment without any basis. If you truly believe this is an immune issue you can understand every kids issues and solutions are different. One size dose not fit all and qualified and informed doctors are the solution, parents need to advocate to change the system so the CCD and the few schooled, certified and informed docs can help direct the evolution of a safe and throughly researched protocol to address this issue. DAN is a mishmash of good docs sharing the same shingle with a bunch of poorly informed and greed driven scoundrels. I know of only a dozen or so that have the understanding and compassion to not risk these kids health in order placate their desperate parents. I can not EVER recommend a parent go find a DAN doctor as a blanket recommendation, Too much damage done. So sad but so true!To: mb12 valtrex Sent: Tue, August 17, 2010 3:14:58 PMSubject: Re: Re: Jackie::RE:Goldberg Great post. Have heard heard of stopcallingitautism.com? Your experience could greatly help their cause. Check it out when you have a few : ) Best wishes to you and your family! So happy to hear you're having success!-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 10:43:38 AMSubject: Re: Re: Jackie::RE:Goldberg Allow me to introduce myself, I am Bill Klimas, the father of a son that was classically Autistic and is now a twelve year old on his way to recovery. We are on the NIDS protocol but I did not find it on any list. My son Connors aunt is Dr Klimas, chairman of the immunology department at U of Miami school of medicine and a highly recognized researcher in CSF and related immune based illnesses. After several years of GF/CF diet and tens of thousands of dollars spent on behavioral therapy co-payments, supplements and such to NO progress, she convinced me to work on his immune system and we went the NIDS route. Three years ago on his initial work up his ASO were 450+, his viral tiers were 875+ and so on. It has been an up and down but what I found most convincing that the bases of Autism is an immune dysfunction happened last summer. We had managed to slowly drive down the HHV6 (to 1/40) and ASO (Normal range) numbers using antivirals and antibiotics and saw amazing results, last June my wife started a diet that allowed fresh pineapple and Connor loved it. within a week we saw regression to the worst he has ever been. We had scheduled blood draws the following week and Connors HHV6 had jumped to 1-240 among other off the scale makers. No change in meds just he introduction of an very strong allergin. It was wild but by triggering an immune reaction the antivirals were rendered useless. It took nearly a month t calm his system and him back down and nearly two months to drive the HHV6 back to 1-80.During the XMRV debate I found this quote from a noted immunologist and it just makes sense."There are two broad aspects to the immune system, TH1 and TH2. TH1 involves Natural Killer (NK) cells whose job it is to identify and destroy viruses. The TH2 side of the immune system involves, amongst other things, antibodies which respond to threats. There is evidence in the literature that patients with ME/CFS are “TH2†biased, i.e. the TH2 aspect of the immune system is over-activated, causing suppression of the TH1 side and high levels of inflammatory cytokines; patients have lower Natural Killer (NK) cell immunity. This bias may mean that opportunistic viruses and bacterial infections can no longer be kept at bay effectively by the TH1 side of the system.RNase L conducts a function of holding the virus at bay until NK cells are available to eradicate the pathogen, however even the RNase L’s ability to perform this function can be compromised over time if TH2 dominates for too long. RNase L dysfunction was also reported in the prostate cancer cases of XMRV, although later research has not found a genetic link. In ME/CFS, any suspected Rnase L deficiency many simply be due to chronic TH2 dominance. If TH2 dominates for too long, it can be hypothesised that viruses such as HHV-6, Epstein Barr Virus (EBV), CMV and Parvovirus B19 can flourish, as well as bacterial infections such as mycoplasma and chlamydia pneumonia. It has been established that the majority of neurodegenerative disease, fatiguing illnesses and neurobehavioral disease patients have chronic bacterial and viral infections. (3). In fact the WPI research claimed to have found higher levels of XMRA in “atypical†MS and Autism. "I am not a medical doctor but Connor was always low iron low potassium and so on. As his immune system normalized all of these returned to normal including B12.To: mb12 valtrex Sent: Tue, August 17, 2010 9:26:18 AMSubject: Re: Jackie::RE:Goldberg Jackie, Thrilled to hear about your son's progress! SO happy for you guys. best, sloan > > > > > > > > > > > > Here is a question maybe someone has an answer to: > > > > > > > > > > > > Some have argued that HBOT is dangerous because while it increases the flow > > > > >of > > > > > > > > > > > oxygen to areas of the brain that need it, it also increases the flow of > > > > >oxygen > > > > > > > > > > > to areas that do NOT. > > > > > > > > > > > > SSRI's are used in this instance to increase bloodflow to certain areas of > > > > >the > > > > > > > > > > > brain. It is able to "weed out" exactly which areas to avoid? (unlike > > > > > > hbot)????? > > > > > > > > > > > > Is that correct? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > > > From: "boothlindy@" <boothlindy@> > > > > > > To: mb12 valtrex > > > > > > Sent: Fri, August 13, 2010 2:16:17 PM > > > > > > Subject: RE:Goldberg > > > > > > > > > > > > > > > > > > I am a mother of a 5 year old daughter who has just started (3 months in) the > > > > > > > > > > > NIDS protocol with Dr Goldberg. We worked with 2 DAN doctors for 1.5 years > > > > >with > > > > > > > > > > > good results but hit a wall so to speak. > > > > > > > > > > > > > > > > > > When I wanted to try the virus protocol our DAN said OK gave us the meds a > > > > >piece > > > > > > > > > > > of paper with the info and said to us not much has been done in the virus > > > > >area > > > > > > > > > > > by the medical establishment and it does not work for most kids. Something > > > > >felt > > > > > > > > > > > wrong with her statement so I joined this site and was led to Dr Goldberg by > > > > >a > > > > > > > > > > > passionate mom (Marcia). > > > > > > > > > > > > That said when we first had our appt. I was somewhat taken aback by his take > > > > >on > > > > > > > > > > > DAN being the 'bad guys'. He went on about it for a little too long for my > > > > > > liking ... DAN was there for us when everybody else was saying go home and > > > > > > accept that is how your daughter is going to be. My 'bad guys' were the > > > > >standard > > > > > > > > > > > medical guys pushing the vaccines on my child with a severely and visible > > > > > > compromised immune system. I had to cut him short and say lets get back to > > > > >what > > > > > > > > > > > we came for, my fight is not with DAN but with healing my child. DAN bashing > > > > >as > > > > > > > > > > > I call it feels decidely uncomfortable for me, especially as they recovering > > > > >a > > > > > > > > > > > lot of of children, yes I do feel like because DAN are trying so many bases > > > > > > gut/metals/viral etc the doctors can throw a lot of things at us and for > > > > >those > > > > > > > > > > > of us struggling to study and grasp all the info out there we can tend to > > > > >rely > > > > > > > > > > > heavily on them for it all, hence over supplementing with the fear we are > > > > > > missing something or if we remove some they regress after all our hard won > > > > > > gains. I also think some of the DAN's are overloaded and good follow up > > > > > > proceedures are lacking in their offices. NIDS protocol does not spread > > > > >itself > > > > > > > > > > > so thin. > > > > > > > > > > > > That said Dr Goldberg is a doctor who takes healing your child seriously, > > > > >very > > > > > > > > > > > prepared and is not afraid to speak his mind and offend. I have accepted this > > > > >as > > > > > > > > > > > part of the deal working with him (who wants a wishy washy doctor healing > > > > >your > > > > > > > > > > > child anyway). He is always prepared for our telephone consults, knows my > > > > > > daughter history, and kicks my butt when I was too scared to start the SSRI' > > > > > > > > > > saying I am here to try and heal your child lets not waste time (my > > > > >words...his > > > > > > > > > > > were stronger). > > > > > > > > > > > > I think for many passionate caring doctors who have had great success in > > > > >their > > > > > > > > > > > specific protocols they feel strongly they can take ALL our children to > > > > > > recovery. Having read many a post on many a site I now know this is not so. > > > > >Our > > > > > > > > > > > children are all so different and their issues so variable it indeed may take > > > > > > > > > > > one to many more protocols to get there. > > > > > > > > > > > > > > > > > > Suffice to say we as parents have to stay on our toes and know when to stay > > > > >and > > > > > > > > > > > when to move on (Cheryl's advice to me...thks)....the hard part is knowing > > > > >what > > > > > > > > > > > to do when we are not doctors, just parents with a powerful love in our > > > > >hearts > > > > > > > > > > > to heal our kids and see them flourish in this world. > > > > > > > > > > > > Lindy > > > > > > > > > > > > PS. We have been on the SSRI's for 9 days and the results have been nothing > > > > > > short of amazing for my daughter. We are holding our breaths as we saw > > > > >similar > > > > > > > > > > > results with HBOT which did not hold. Right now I am glad Dr G kicked my > > > > >butt. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 RhondaWe do Acyclovir and immunovir as well as an antifungal and a SSRI. They do not combine to address viral infections. Acyclovir -anti viral, Immuovir is an immune modulator that addresses low NK cells and function and supports the immune systems job of addressing viral infection. The antifungal takes a load off the immune system to help strengthen it and SSRI does not effect viral infection but helps deliver the antiviral to areas of the brain with low blood flow that are infected. But you can not attempt this protocol without a proactive doc that is truly paying attention and is practiced in this protocol. If the parent is the pediatrician you have a fool for a doctor. Immunovir can and will cause raised uric acid levels so it is pulses and monitored. Antifungals can cause liver damage and so on. The two NIDS doctors are Dr Russel in Texas and Dr Goldberg in California. There are some Dan docs (I have read about on the lists) that believe in the immune Th1 - Th2 shift but I have not follow them because I do not need to. I can ask my CSF expert and see if there are any others that come close and I will. BillTo: "mb12 valtrex " <mb12 valtrex >Sent: Tue, August 17, 2010 8:53:04 PMSubject: Re: Re: Jackie::RE:Goldberg Wow, I don't think my Dan would go that high. I wonder if I added a bunch together like acyclovir, immunovir, and Ldm-100 if that would work?Rhonda Masengale The problem with Valtrex for Herpes in the brain vs else were is the blood brain barrier. The recommended dosage for herpes from Glaxo is a theraputic dosage that dose not take in consideration that only a very small percentage actually reaches the infection if it is truly in the frontal lob. We took it once daily before Dr G with no effect then at three times the recommended dosage with temporary success but in reality we were not truly successful until we went to acyclovir at 800 mg 5 time daily. The blood brain barrier prevents Valtrex from being effective under CDC guide lines and most DAN doc's depend on this for liability reasons. If you have tried Valtex once daily you probably did not see results! Meds designed for HIV are dosed at a much higher dosage and are designed to reach the nervous system.To: "mb12 valtrex " <mb12 valtrex >Sent: Tue, August 17, 2010 5:07:24 PMSubject: Re: Re: Jackie::RE:Goldberg I find this very interesting b/c my son responded to valtrex in 08 very well but our new Dan took them off b/c he didn't know enough about the protocol. Both boys slid backwards, BAD! I put my son back on it recently and see nothing so far but his allergies are worse now than back then. I wonder if he is not responding due to severity of allergies? Hummmm. He is also on an immune suppressor for his gut right now. I guess that wouldn't help him get his immune system better? What do you think?Rhonda Masengale Great post. Have heard heard of stopcallingitautism.com? Your experience could greatly help their cause. Check it out when you have a few : ) Best wishes to you and your family! So happy to hear you're having success!-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 10:43:38 AMSubject: Re: Re: Jackie::RE:Goldberg Allow me to introduce myself, I am Bill Klimas, the father of a son that was classically Autistic and is now a twelve year old on his way to recovery. We are on the NIDS protocol but I did not find it on any list. My son Connors aunt is Dr Klimas, chairman of the immunology department at U of Miami school of medicine and a highly recognized researcher in CSF and related immune based illnesses. After several years of GF/CF diet and tens of thousands of dollars spent on behavioral therapy co-payments, supplements and such to NO progress, she convinced me to work on his immune system and we went the NIDS route. Three years ago on his initial work up his ASO were 450+, his viral tiers were 875+ and so on. It has been an up and down but what I found most convincing that the bases of Autism is an immune dysfunction happened last summer. We had managed to slowly drive down the HHV6 (to 1/40) and ASO (Normal range) numbers using antivirals and antibiotics and saw amazing results, last June my wife started a diet that allowed fresh pineapple and Connor loved it. within a week we saw regression to the worst he has ever been. We had scheduled blood draws the following week and Connors HHV6 had jumped to 1-240 among other off the scale makers. No change in meds just he introduction of an very strong allergin. It was wild but by triggering an immune reaction the antivirals were rendered useless. It took nearly a month t calm his system and him back down and nearly two months to drive the HHV6 back to 1-80.During the XMRV debate I found this quote from a noted immunologist and it just makes sense."There are two broad aspects to the immune system, TH1 and TH2. TH1 involves Natural Killer (NK) cells whose job it is to identify and destroy viruses. The TH2 side of the immune system involves, amongst other things, antibodies which respond to threats. There is evidence in the literature that patients with ME/CFS are “TH2†biased, i.e. the TH2 aspect of the immune system is over-activated, causing suppression of the TH1 side and high levels of inflammatory cytokines; patients have lower Natural Killer (NK) cell immunity. This bias may mean that opportunistic viruses and bacterial infections can no longer be kept at bay effectively by the TH1 side of the system.RNase L conducts a function of holding the virus at bay until NK cells are available to eradicate the pathogen, however even the RNase L’s ability to perform this function can be compromised over time if TH2 dominates for too long. RNase L dysfunction was also reported in the prostate cancer cases of XMRV, although later research has not found a genetic link. In ME/CFS, any suspected Rnase L deficiency many simply be due to chronic TH2 dominance. If TH2 dominates for too long, it can be hypothesised that viruses such as HHV-6, Epstein Barr Virus (EBV), CMV and Parvovirus B19 can flourish, as well as bacterial infections such as mycoplasma and chlamydia pneumonia. It has been established that the majority of neurodegenerative disease, fatiguing illnesses and neurobehavioral disease patients have chronic bacterial and viral infections. (3). In fact the WPI research claimed to have found higher levels of XMRA in “atypical†MS and Autism. "I am not a medical doctor but Connor was always low iron low potassium and so on. As his immune system normalized all of these returned to normal including B12.To: mb12 valtrex Sent: Tue, August 17, 2010 9:26:18 AMSubject: Re: Jackie::RE:Goldberg Jackie, Thrilled to hear about your son's progress! SO happy for you guys. best, sloan > > > > > > > > Jackie, You have a heavy duty resume--please one I have been at this for three > > > > years and not done all you have--question, how does Dr G. get the hvy metals > > > > out of the body if he does not do chelation? Please I am very interested. > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > From: jcatalahana <jcataly@> > > > > To: mb12 valtrex > > > > Sent: Sun, August 15, 2010 7:50:58 PM > > > > Subject: Re: RE:Goldberg > > > > > > > >  > > > > I too must chime in and speak personally for myself and our experience. We have > > > > done DAN (everything DAN had to offer we did it), Krisgman and Gupta for five > > > > years including Yasko, two stem cells treatments, oh yeah, and we even bought > > > > our own HARD Chamber and did countless hours of HBOT per our DAN's > > > > recommendation. None of this has come clo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 He was 65 lbs and three years later he is 106 lb thin muscular and growing like a weed in July. He is still on it and I would not take him off it until they unravel the cause of the immune dysfunction. Follow XMRV, very promising as a potential route cause. we will know within a year.To: "mb12 valtrex " <mb12 valtrex >Sent: Tue, August 17, 2010 9:07:46 PMSubject: Re: Re: Jackie::RE:Goldberg How much did your son weigh at tat dose? Was he on it for very long?Rhonda Masengale The problem with Valtrex for Herpes in the brain vs else were is the blood brain barrier. The recommended dosage for herpes from Glaxo is a theraputic dosage that dose not take in consideration that only a very small percentage actually reaches the infection if it is truly in the frontal lob. We took it once daily before Dr G with no effect then at three times the recommended dosage with temporary success but in reality we were not truly successful until we went to acyclovir at 800 mg 5 time daily. The blood brain barrier prevents Valtrex from being effective under CDC guide lines and most DAN doc's depend on this for liability reasons. If you have tried Valtex once daily you probably did not see results! Meds designed for HIV are dosed at a much higher dosage and are designed to reach the nervous system.To: "mb12 valtrex " <mb12 valtrex >Sent: Tue, August 17, 2010 5:07:24 PMSubject: Re: Re: Jackie::RE:Goldberg I find this very interesting b/c my son responded to valtrex in 08 very well but our new Dan took them off b/c he didn't know enough about the protocol. Both boys slid backwards, BAD! I put my son back on it recently and see nothing so far but his allergies are worse now than back then. I wonder if he is not responding due to severity of allergies? Hummmm. He is also on an immune suppressor for his gut right now. I guess that wouldn't help him get his immune system better? What do you think?Rhonda Masengale Great post. Have heard heard of stopcallingitautism.com? Your experience could greatly help their cause. Check it out when you have a few : ) Best wishes to you and your family! So happy to hear you're having success!-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 10:43:38 AMSubject: Re: Re: Jackie::RE:Goldberg Allow me to introduce myself, I am Bill Klimas, the father of a son that was classically Autistic and is now a twelve year old on his way to recovery. We are on the NIDS protocol but I did not find it on any list. My son Connors aunt is Dr Klimas, chairman of the immunology department at U of Miami school of medicine and a highly recognized researcher in CSF and related immune based illnesses. After several years of GF/CF diet and tens of thousands of dollars spent on behavioral therapy co-payments, supplements and such to NO progress, she convinced me to work on his immune system and we went the NIDS route. Three years ago on his initial work up his ASO were 450+, his viral tiers were 875+ and so on. It has been an up and down but what I found most convincing that the bases of Autism is an immune dysfunction happened last summer. We had managed to slowly drive down the HHV6 (to 1/40) and ASO (Normal range) numbers using antivirals and antibiotics and saw amazing results, last June my wife started a diet that allowed fresh pineapple and Connor loved it. within a week we saw regression to the worst he has ever been. We had scheduled blood draws the following week and Connors HHV6 had jumped to 1-240 among other off the scale makers. No change in meds just he introduction of an very strong allergin. It was wild but by triggering an immune reaction the antivirals were rendered useless. It took nearly a month t calm his system and him back down and nearly two months to drive the HHV6 back to 1-80.During the XMRV debate I found this quote from a noted immunologist and it just makes sense."There are two broad aspects to the immune system, TH1 and TH2. TH1 involves Natural Killer (NK) cells whose job it is to identify and destroy viruses. The TH2 side of the immune system involves, amongst other things, antibodies which respond to threats. There is evidence in the literature that patients with ME/CFS are “TH2†biased, i.e. the TH2 aspect of the immune system is over-activated, causing suppression of the TH1 side and high levels of inflammatory cytokines; patients have lower Natural Killer (NK) cell immunity. This bias may mean that opportunistic viruses and bacterial infections can no longer be kept at bay effectively by the TH1 side of the system.RNase L conducts a function of holding the virus at bay until NK cells are available to eradicate the pathogen, however even the RNase L’s ability to perform this function can be compromised over time if TH2 dominates for too long. RNase L dysfunction was also reported in the prostate cancer cases of XMRV, although later research has not found a genetic link. In ME/CFS, any suspected Rnase L deficiency many simply be due to chronic TH2 dominance. If TH2 dominates for too long, it can be hypothesised that viruses such as HHV-6, Epstein Barr Virus (EBV), CMV and Parvovirus B19 can flourish, as well as bacterial infections such as mycoplasma and chlamydia pneumonia. It has been established that the majority of neurodegenerative disease, fatiguing illnesses and neurobehavioral disease patients have chronic bacterial and viral infections. (3). In fact the WPI research claimed to have found higher levels of XMRA in “atypical†MS and Autism. "I am not a medical doctor but Connor was always low iron low potassium and so on. As his immune system normalized all of these returned to normal including B12.To: mb12 valtrex Sent: Tue, August 17, 2010 9:26:18 AMSubject: Re: Jackie::RE:Goldberg Jackie, Thrilled to hear about your son's progress! SO happy for you guys. best, sloan > > > > > > > > Jackie, You have a heavy duty resume--please one I have been at this for three > > > > years and not done all you have--question, how does Dr G. get the hvy metals > > > > out of the body if he does not do chelation? Please I am very interested. > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > From: jcatalahana <jcataly@> > > > > To: mb12 valtrex > > > > Sent: Sun, August 15, 2010 7:50:58 PM > > > > Subject: Re: RE:Goldberg > > > > > > > >  > > > > I too must chime in and speak personally for myself and our experience. We have > > > > done DAN (everything DAN had to offer we did it), Krisgman and Gupta for five > > > > years including Yasko, two stem cells treatments, oh yeah, and we even bought > > > > our own HARD Chamber and did countless hours of HBOT per our DAN's > > > > recommendation. None of this has come clo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 Tammy I am sorry my post drives you crazy but I am not a doctor . I just happen to have a leading immunologist (Not my sons doctor) as a sister and she is willing to explain the complexities of an immune dysfunction in terms I understand. Do not ever believe there is nothing you can do. Follow the breaking research in CSF, Autism and Immune issues and do what you can to help your child develop normally. ABA, speech and then believe that this is not classic Autism and can be treated if you treat the symptoms and ignore the mainstream guys that don't go there. Find a good allergists and check out all of his food and environmental allergies. Then look into a good teaching hospital and ask a leading immunologist to investigate his immune system. The NIDS site can help you argue your case. lastly pray the finger the route cause of the immune disorder.To: mb12 valtrex Sent: Tue, August 17, 2010 9:19:35 PMSubject: Re: Re: Jackie::RE:Goldberg well that is the very thing that just makes me crazy. Western docs freaking out at parents taking matters into their own hands but we are left with no other choice if we ever expect our children to be well. My sons' own pediatrician refused to run any tests. Not one. Even in light of our family history. I guess that was the part where I was supposed to take my son home and allow him to live out the rest of his life unwell because our medical industry is dragging their feet. Some of us do not have the money, resources or luck to continually search out a doctor who actually cares enough to help us try to figure things out. Those are few and far between. Even my old pediatrician - a close friend of my dad - told me in a nutshell as gently as he could to do what I can for son's adhd symptoms - but as far as his more severe spectrum symptoms to just accept it for what it is. What choice are we left?? : (-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 4:30:25 PMSubject: Re: Re: Jackie::RE:Goldberg I wrote the opening page of the SCIA group description, I was a founding board member. I believe that immune issues need to be very closely monitored by proactive board certified immunologists in order to not risk harm to children. The SCIA's position to support parents playing internet doctors without the needed back round has forced me to step away. Immune issues require an understanding beyond a wikipedia education and desperation drives parents (especially new bees) to taking risks that far outweigh benefits of parent developed protocols based on an internet salesmanship offer! Poor medicine and greed made my kid sick. I will not turn to the same mentality to cure him. Don't get me wrong, knowledge is the solution but it is very important to consider the source. Unfortunately the SCIA promotes self diagnosis and often discusses treatment without any basis. If you truly believe this is an immune issue you can understand every kids issues and solutions are different. One size dose not fit all and qualified and informed doctors are the solution, parents need to advocate to change the system so the CCD and the few schooled, certified and informed docs can help direct the evolution of a safe and throughly researched protocol to address this issue. DAN is a mishmash of good docs sharing the same shingle with a bunch of poorly informed and greed driven scoundrels. I know of only a dozen or so that have the understanding and compassion to not risk these kids health in order placate their desperate parents. I can not EVER recommend a parent go find a DAN doctor as a blanket recommendation, Too much damage done. So sad but so true!To: mb12 valtrex Sent: Tue, August 17, 2010 3:14:58 PMSubject: Re: Re: Jackie::RE:Goldberg Great post. Have heard heard of stopcallingitautism.com? Your experience could greatly help their cause. Check it out when you have a few : ) Best wishes to you and your family! So happy to hear you're having success!-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 10:43:38 AMSubject: Re: Re: Jackie::RE:Goldberg Allow me to introduce myself, I am Bill Klimas, the father of a son that was classically Autistic and is now a twelve year old on his way to recovery. We are on the NIDS protocol but I did not find it on any list. My son Connors aunt is Dr Klimas, chairman of the immunology department at U of Miami school of medicine and a highly recognized researcher in CSF and related immune based illnesses. After several years of GF/CF diet and tens of thousands of dollars spent on behavioral therapy co-payments, supplements and such to NO progress, she convinced me to work on his immune system and we went the NIDS route. Three years ago on his initial work up his ASO were 450+, his viral tiers were 875+ and so on. It has been an up and down but what I found most convincing that the bases of Autism is an immune dysfunction happened last summer. We had managed to slowly drive down the HHV6 (to 1/40) and ASO (Normal range) numbers using antivirals and antibiotics and saw amazing results, last June my wife started a diet that allowed fresh pineapple and Connor loved it. within a week we saw regression to the worst he has ever been. We had scheduled blood draws the following week and Connors HHV6 had jumped to 1-240 among other off the scale makers. No change in meds just he introduction of an very strong allergin. It was wild but by triggering an immune reaction the antivirals were rendered useless. It took nearly a month t calm his system and him back down and nearly two months to drive the HHV6 back to 1-80.During the XMRV debate I found this quote from a noted immunologist and it just makes sense."There are two broad aspects to the immune system, TH1 and TH2. TH1 involves Natural Killer (NK) cells whose job it is to identify and destroy viruses. The TH2 side of the immune system involves, amongst other things, antibodies which respond to threats. There is evidence in the literature that patients with ME/CFS are “TH2†biased, i.e. the TH2 aspect of the immune system is over-activated, causing suppression of the TH1 side and high levels of inflammatory cytokines; patients have lower Natural Killer (NK) cell immunity. This bias may mean that opportunistic viruses and bacterial infections can no longer be kept at bay effectively by the TH1 side of the system.RNase L conducts a function of holding the virus at bay until NK cells are available to eradicate the pathogen, however even the RNase L’s ability to perform this function can be compromised over time if TH2 dominates for too long. RNase L dysfunction was also reported in the prostate cancer cases of XMRV, although later research has not found a genetic link. In ME/CFS, any suspected Rnase L deficiency many simply be due to chronic TH2 dominance. If TH2 dominates for too long, it can be hypothesised that viruses such as HHV-6, Epstein Barr Virus (EBV), CMV and Parvovirus B19 can flourish, as well as bacterial infections such as mycoplasma and chlamydia pneumonia. It has been established that the majority of neurodegenerative disease, fatiguing illnesses and neurobehavioral disease patients have chronic bacterial and viral infections. (3). In fact the WPI research claimed to have found higher levels of XMRA in “atypical†MS and Autism. "I am not a medical doctor but Connor was always low iron low potassium and so on. As his immune system normalized all of these returned to normal including B12.To: mb12 valtrex Sent: Tue, August 17, 2010 9:26:18 AMSubject: Re: Jackie::RE:Goldberg Jackie, Thrilled to hear about your son's progress! SO happy for you guys. best, sloan > > > > > > > > > > > > Here is a question maybe someone has an answer to: > > > > > > > > > > > > Some have argued that HBOT is dangerous because while it increases the flow > > > > >of > > > > > > > > > > > oxygen to areas of the brain that need it, it also increases the flow of > > > > >oxygen > > > > > > > > > > > to areas that do NOT. > > > > > > > > > > > > SSRI's are used in this instance to increase bloodflow to certain areas of > > > > >the > > > > > > > > > > > brain. It is able to "weed out" exactly which areas to avoid? (unlike > > > > > > hbot)????? > > > > > > > > > > > > Is that correct? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > > > From: "boothlindy@" <boothlindy@> > > > > > > To: mb12 valtrex > > > > > > Sent: Fri, August 13, 2010 2:16:17 PM > > > > > > Subject: RE:Goldberg > > > > > > > > > > > > > > > > > > I am a mother of a 5 year old daughter who has just started (3 months in) the > > > > > > > > > > > NIDS protocol with Dr Goldberg. We worked with 2 DAN doctors for 1.5 years > > > > >with > > > > > > > > > > > good results but hit a wall so to speak. > > > > > > > > > > > > > > > > > > When I wanted to try the virus protocol our DAN said OK gave us the meds a > > > > >piece > > > > > > > > > > > of paper with the info and said to us not much has been done in the virus > > > > >area > > > > > > > > > > > by the medical establishment and it does not work for most kids. Something > > > > >felt > > > > > > > > > > > wrong with her statement so I joined this site and was led to Dr Goldberg by > > > > >a > > > > > > > > > > > passionate mom (Marcia). > > > > > > > > > > > > That said when we first had our appt. I was somewhat taken aback by his take > > > > >on > > > > > > > > > > > DAN being the 'bad guys'. He went on about it for a little too long for my > > > > > > liking ... DAN was there for us when everybody else was saying go home and > > > > > > accept that is how your daughter is going to be. My 'bad guys' were the > > > > >standard > > > > > > > > > > > medical guys pushing the vaccines on my child with a severely and visible > > > > > > compromised immune system. I had to cut him short and say lets get back to > > > > >what > > > > > > > > > > > we came for, my fight is not with DAN but with healing my child. DAN bashing > > > > >as > > > > > > > > > > > I call it feels decidely uncomfortable for me, especially as they recovering > > > > >a > > > > > > > > > > > lot of of children, yes I do feel like because DAN are trying so many bases > > > > > > gut/metals/viral etc the doctors can throw a lot of things at us and for > > > > >those > > > > > > > > > > > of us struggling to study and grasp all the info out there we can tend to > > > > >rely > > > > > > > > > > > heavily on them for it all, hence over supplementing with the fear we are > > > > > > missing something or if we remove some they regress after all our hard won > > > > > > gains. I also think some of the DAN's are overloaded and good follow up > > > > > > proceedures are lacking in their offices. NIDS protocol does not spread > > > > >itself > > > > > > > > > > > so thin. > > > > > > > > > > > > That said Dr Goldberg is a doctor who takes healing your child seriously, > > > > >very > > > > > > > > > > > prepared and is not afraid to speak his mind and offend. I have accepted this > > > > >as > > > > > > > > > > > part of the deal working with him (who wants a wishy washy doctor healing > > > > >your > > > > > > > > > > > child anyway). He is always prepared for our telephone consults, knows my > > > > > > daughter history, and kicks my butt when I was too scared to start the SSRI' > > > > > > > > > > saying I am here to try and heal your child lets not waste time (my > > > > >words...his > > > > > > > > > > > were stronger). > > > > > > > > > > > > I think for many passionate caring doctors who have had great success in > > > > >their > > > > > > > > > > > specific protocols they feel strongly they can take ALL our children to > > > > > > recovery. Having read many a post on many a site I now know this is not so. > > > > >Our > > > > > > > > > > > children are all so different and their issues so variable it indeed may take > > > > > > > > > > > one to many more protocols to get there. > > > > > > > > > > > > > > > > > > Suffice to say we as parents have to stay on our toes and know when to stay > > > > >and > > > > > > > > > > > when to move on (Cheryl's advice to me...thks)....the hard part is knowing > > > > >what > > > > > > > > > > > to do when we are not doctors, just parents with a powerful love in our > > > > >hearts > > > > > > > > > > > to heal our kids and see them flourish in this world. > > > > > > > > > > > > Lindy > > > > > > > > > > > > PS. We have been on the SSRI's for 9 days and the results have been nothing > > > > > > short of amazing for my daughter. We are holding our breaths as we saw > > > > >similar > > > > > > > > > > > results with HBOT which did not hold. Right now I am glad Dr G kicked my > > > > >butt. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 Wow! Sounds great. I really feel this is the root of my kiddos' illness. They did good on valtrex 3 x/day but my youngest did better at 4 x per day. I plan to investigate this further. Thank you for all of the info!Rhonda Masengale He was 65 lbs and three years later he is 106 lb thin muscular and growing like a weed in July. He is still on it and I would not take him off it until they unravel the cause of the immune dysfunction. Follow XMRV, very promising as a potential route cause. we will know within a year.To: "mb12 valtrex " <mb12 valtrex >Sent: Tue, August 17, 2010 9:07:46 PMSubject: Re: Re: Jackie::RE:Goldberg How much did your son weigh at tat dose? Was he on it for very long?Rhonda Masengale The problem with Valtrex for Herpes in the brain vs else were is the blood brain barrier. The recommended dosage for herpes from Glaxo is a theraputic dosage that dose not take in consideration that only a very small percentage actually reaches the infection if it is truly in the frontal lob. We took it once daily before Dr G with no effect then at three times the recommended dosage with temporary success but in reality we were not truly successful until we went to acyclovir at 800 mg 5 time daily. The blood brain barrier prevents Valtrex from being effective under CDC guide lines and most DAN doc's depend on this for liability reasons. If you have tried Valtex once daily you probably did not see results! Meds designed for HIV are dosed at a much higher dosage and are designed to reach the nervous system.To: "mb12 valtrex " <mb12 valtrex >Sent: Tue, August 17, 2010 5:07:24 PMSubject: Re: Re: Jackie::RE:Goldberg I find this very interesting b/c my son responded to valtrex in 08 very well but our new Dan took them off b/c he didn't know enough about the protocol. Both boys slid backwards, BAD! I put my son back on it recently and see nothing so far but his allergies are worse now than back then. I wonder if he is not responding due to severity of allergies? Hummmm. He is also on an immune suppressor for his gut right now. I guess that wouldn't help him get his immune system better? What do you think?Rhonda Masengale Great post. Have heard heard of stopcallingitautism.com? Your experience could greatly help their cause. Check it out when you have a few : ) Best wishes to you and your family! So happy to hear you're having success!-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 10:43:38 AMSubject: Re: Re: Jackie::RE:Goldberg Allow me to introduce myself, I am Bill Klimas, the father of a son that was classically Autistic and is now a twelve year old on his way to recovery. We are on the NIDS protocol but I did not find it on any list. My son Connors aunt is Dr Klimas, chairman of the immunology department at U of Miami school of medicine and a highly recognized researcher in CSF and related immune based illnesses. After several years of GF/CF diet and tens of thousands of dollars spent on behavioral therapy co-payments, supplements and such to NO progress, she convinced me to work on his immune system and we went the NIDS route. Three years ago on his initial work up his ASO were 450+, his viral tiers were 875+ and so on. It has been an up and down but what I found most convincing that the bases of Autism is an immune dysfunction happened last summer. We had managed to slowly drive down the HHV6 (to 1/40) and ASO (Normal range) numbers using antivirals and antibiotics and saw amazing results, last June my wife started a diet that allowed fresh pineapple and Connor loved it. within a week we saw regression to the worst he has ever been. We had scheduled blood draws the following week and Connors HHV6 had jumped to 1-240 among other off the scale makers. No change in meds just he introduction of an very strong allergin. It was wild but by triggering an immune reaction the antivirals were rendered useless. It took nearly a month t calm his system and him back down and nearly two months to drive the HHV6 back to 1-80.During the XMRV debate I found this quote from a noted immunologist and it just makes sense."There are two broad aspects to the immune system, TH1 and TH2. TH1 involves Natural Killer (NK) cells whose job it is to identify and destroy viruses. The TH2 side of the immune system involves, amongst other things, antibodies which respond to threats. There is evidence in the literature that patients with ME/CFS are “TH2†biased, i.e. the TH2 aspect of the immune system is over-activated, causing suppression of the TH1 side and high levels of inflammatory cytokines; patients have lower Natural Killer (NK) cell immunity. This bias may mean that opportunistic viruses and bacterial infections can no longer be kept at bay effectively by the TH1 side of the system.RNase L conducts a function of holding the virus at bay until NK cells are available to eradicate the pathogen, however even the RNase L’s ability to perform this function can be compromised over time if TH2 dominates for too long. RNase L dysfunction was also reported in the prostate cancer cases of XMRV, although later research has not found a genetic link. In ME/CFS, any suspected Rnase L deficiency many simply be due to chronic TH2 dominance. If TH2 dominates for too long, it can be hypothesised that viruses such as HHV-6, Epstein Barr Virus (EBV), CMV and Parvovirus B19 can flourish, as well as bacterial infections such as mycoplasma and chlamydia pneumonia. It has been established that the majority of neurodegenerative disease, fatiguing illnesses and neurobehavioral disease patients have chronic bacterial and viral infections. (3). In fact the WPI research claimed to have found higher levels of XMRA in “atypical†MS and Autism. "I am not a medical doctor but Connor was always low iron low potassium and so on. As his immune system normalized all of these returned to normal including B12.To: mb12 valtrex Sent: Tue, August 17, 2010 9:26:18 AMSubject: Re: Jackie::RE:Goldberg Jackie, Thrilled to hear about your son's progress! SO happy for you guys. best, sloan > > > > > > > > > From: jcatalahana <jcataly@> > > > Subject: Re: Jackie::RE:Goldberg > > > To: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 Thanks Bill, I will look up dr. as we are in OK. Do you know his full name? I can get my Hubby to travel to Texas but not California. we already go to Texas for our Dan and GI doc, but I really think anti-virals are going to be critical for their recovery. I've already seen how it affects them for the better. Now to get them back on it!!! Rhonda Masengale RhondaWe do Acyclovir and immunovir as well as an antifungal and a SSRI. They do not combine to address viral infections. Acyclovir -anti viral, Immuovir is an immune modulator that addresses low NK cells and function and supports the immune systems job of addressing viral infection. The antifungal takes a load off the immune system to help strengthen it and SSRI does not effect viral infection but helps deliver the antiviral to areas of the brain with low blood flow that are infected. But you can not attempt this protocol without a proactive doc that is truly paying attention and is practiced in this protocol. If the parent is the pediatrician you have a fool for a doctor. Immunovir can and will cause raised uric acid levels so it is pulses and monitored. Antifungals can cause liver damage and so on. The two NIDS doctors are Dr Russel in Texas and Dr Goldberg in California. There are some Dan docs (I have read about on the lists) that believe in the immune Th1 - Th2 shift but I have not follow them because I do not need to. I can ask my CSF expert and see if there are any others that come close and I will. BillTo: "mb12 valtrex " <mb12 valtrex >Sent: Tue, August 17, 2010 8:53:04 PMSubject: Re: Re: Jackie::RE:Goldberg Wow, I don't think my Dan would go that high. I wonder if I added a bunch together like acyclovir, immunovir, and Ldm-100 if that would work?Rhonda Masengale The problem with Valtrex for Herpes in the brain vs else were is the blood brain barrier. The recommended dosage for herpes from Glaxo is a theraputic dosage that dose not take in consideration that only a very small percentage actually reaches the infection if it is truly in the frontal lob. We took it once daily before Dr G with no effect then at three times the recommended dosage with temporary success but in reality we were not truly successful until we went to acyclovir at 800 mg 5 time daily. The blood brain barrier prevents Valtrex from being effective under CDC guide lines and most DAN doc's depend on this for liability reasons. If you have tried Valtex once daily you probably did not see results! Meds designed for HIV are dosed at a much higher dosage and are designed to reach the nervous system.To: "mb12 valtrex " <mb12 valtrex >Sent: Tue, August 17, 2010 5:07:24 PMSubject: Re: Re: Jackie::RE:Goldberg I find this very interesting b/c my son responded to valtrex in 08 very well but our new Dan took them off b/c he didn't know enough about the protocol. Both boys slid backwards, BAD! I put my son back on it recently and see nothing so far but his allergies are worse now than back then. I wonder if he is not responding due to severity of allergies? Hummmm. He is also on an immune suppressor for his gut right now. I guess that wouldn't help him get his immune system better? What do you think?Rhonda Masengale Great post. Have heard heard of stopcallingitautism.com? Your experience could greatly help their cause. Check it out when you have a few : ) Best wishes to you and your family! So happy to hear you're having success!-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 10:43:38 AMSubject: Re: Re: Jackie::RE:Goldberg Allow me to introduce myself, I am Bill Klimas, the father of a son that was classically Autistic and is now a twelve year old on his way to recovery. We are on the NIDS protocol but I did not find it on any list. My son Connors aunt is Dr Klimas, chairman of the immunology department at U of Miami school of medicine and a highly recognized researcher in CSF and related immune based illnesses. After several years of GF/CF diet and tens of thousands of dollars spent on behavioral therapy co-payments, supplements and such to NO progress, she convinced me to work on his immune system and we went the NIDS route. Three years ago on his initial work up his ASO were 450+, his viral tiers were 875+ and so on. It has been an up and down but what I found most convincing that the bases of Autism is an immune dysfunction happened last summer. We had managed to slowly drive down the HHV6 (to 1/40) and ASO (Normal range) numbers using antivirals and antibiotics and saw amazing results, last June my wife started a diet that allowed fresh pineapple and Connor loved it. within a week we saw regression to the worst he has ever been. We had scheduled blood draws the following week and Connors HHV6 had jumped to 1-240 among other off the scale makers. No change in meds just he introduction of an very strong allergin. It was wild but by triggering an immune reaction the antivirals were rendered useless. It took nearly a month t calm his system and him back down and nearly two months to drive the HHV6 back to 1-80.During the XMRV debate I found this quote from a noted immunologist and it just makes sense."There are two broad aspects to the immune system, TH1 and TH2. TH1 involves Natural Killer (NK) cells whose job it is to identify and destroy viruses. The TH2 side of the immune system involves, amongst other things, antibodies which respond to threats. There is evidence in the literature that patients with ME/CFS are “TH2†biased, i.e. the TH2 aspect of the immune system is over-activated, causing suppression of the TH1 side and high levels of inflammatory cytokines; patients have lower Natural Killer (NK) cell immunity. This bias may mean that opportunistic viruses and bacterial infections can no longer be kept at bay effectively by the TH1 side of the system.RNase L conducts a function of holding the virus at bay until NK cells are available to eradicate the pathogen, however even the RNase L’s ability to perform this function can be compromised over time if TH2 dominates for too long. RNase L dysfunction was also reported in the prostate cancer cases of XMRV, although later research has not found a genetic link. In ME/CFS, any suspected Rnase L deficiency many simply be due to chronic TH2 dominance. If TH2 dominates for too long, it can be hypothesised that viruses such as HHV-6, Epstein Barr Virus (EBV), CMV and Parvovirus B19 can flourish, as well as bacterial infections such as mycoplasma and chlamydia pneumonia. It has been established that the majority of neurodegenerative disease, fatiguing illnesses and neurobehavioral disease patients have chronic bacterial and viral infections. (3). In fact the WPI research claimed to have found higher levels of XMRA in “atypical†MS and Autism. "I am not a medical doctor but Connor was always low iron low potassium and so on. As his immune system normalized all of these returned to normal including B12.To: mb12 valtrex Sent: Tue, August 17, 2010 9:26:18 AMSubject: Re: Jackie::RE:Goldberg Jackie, Thrilled to hear about your son's progress! SO happy for you guys. best, sloan > > > > I was just wondering how you decided to see Dr Goldberg? I mean I have looked at the NIDS web group. I had titers run for Epstein-Barr, > > HSV 1+2, HHV-6, and Cytomegalovirus. All showed nothing so I ruled out treating for viruses. Has anyone had there tests come back normal but still treated for viruses and saw results? > > > > Thanks! > > > > --- In mb12valtr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 Oh - your posts don't drive me crazy at all. Western medicine is what drives me crazy. I love hearing success stories and any experience people have to offer. I was refered to an "excellent" allergist who will not even acknowledge the fact that yeast can be an issue. <sigh> He could not see a problem with the deep itching in my son's ear, therefore, the problem does not exist.rrrr. This is the same story over and over. I am very glad that your family had the good fortune to find the right people to help you. My son's speech and hearing assessments were done at the local children's hospital - we were sent home with not even so much as a brochure. It's pathetic. Back then I didn't know the right questions to ask or where to turn for help - now I know better. I've learned a great deal from "do-it-yourselfers" ---much much more than just supplemental treatment. For instance, I didn't even know ABA existed or that there were such things as developmental pediatricians that exist right there in that very hospital. How does that happen???????? I'm appalled at both myself and the "experts" my son is surrounded by. It's crazy. So while I wholeheartedly agree with you that we need more competent doctors on board, our kids don't have time to sit around and wait for them to get up off their a***** : )Be well!-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 9:37:36 PMSubject: Re: Re: Jackie::RE:Goldberg Tammy I am sorry my post drives you crazy but I am not a doctor . I just happen to have a leading immunologist (Not my sons doctor) as a sister and she is willing to explain the complexities of an immune dysfunction in terms I understand. Do not ever believe there is nothing you can do. Follow the breaking research in CSF, Autism and Immune issues and do what you can to help your child develop normally. ABA, speech and then believe that this is not classic Autism and can be treated if you treat the symptoms and ignore the mainstream guys that don't go there. Find a good allergists and check out all of his food and environmental allergies. Then look into a good teaching hospital and ask a leading immunologist to investigate his immune system. The NIDS site can help you argue your case. lastly pray the finger the route cause of the immune disorder.To: mb12 valtrex Sent: Tue, August 17, 2010 9:19:35 PMSubject: Re: Re: Jackie::RE:Goldberg well that is the very thing that just makes me crazy. Western docs freaking out at parents taking matters into their own hands but we are left with no other choice if we ever expect our children to be well. My sons' own pediatrician refused to run any tests. Not one. Even in light of our family history. I guess that was the part where I was supposed to take my son home and allow him to live out the rest of his life unwell because our medical industry is dragging their feet. Some of us do not have the money, resources or luck to continually search out a doctor who actually cares enough to help us try to figure things out. Those are few and far between. Even my old pediatrician - a close friend of my dad - told me in a nutshell as gently as he could to do what I can for son's adhd symptoms - but as far as his more severe spectrum symptoms to just accept it for what it is. What choice are we left?? : (-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 4:30:25 PMSubject: Re: Re: Jackie::RE:Goldberg I wrote the opening page of the SCIA group description, I was a founding board member. I believe that immune issues need to be very closely monitored by proactive board certified immunologists in order to not risk harm to children. The SCIA's position to support parents playing internet doctors without the needed back round has forced me to step away. Immune issues require an understanding beyond a wikipedia education and desperation drives parents (especially new bees) to taking risks that far outweigh benefits of parent developed protocols based on an internet salesmanship offer! Poor medicine and greed made my kid sick. I will not turn to the same mentality to cure him. Don't get me wrong, knowledge is the solution but it is very important to consider the source. Unfortunately the SCIA promotes self diagnosis and often discusses treatment without any basis. If you truly believe this is an immune issue you can understand every kids issues and solutions are different. One size dose not fit all and qualified and informed doctors are the solution, parents need to advocate to change the system so the CCD and the few schooled, certified and informed docs can help direct the evolution of a safe and throughly researched protocol to address this issue. DAN is a mishmash of good docs sharing the same shingle with a bunch of poorly informed and greed driven scoundrels. I know of only a dozen or so that have the understanding and compassion to not risk these kids health in order placate their desperate parents. I can not EVER recommend a parent go find a DAN doctor as a blanket recommendation, Too much damage done. So sad but so true!To: mb12 valtrex Sent: Tue, August 17, 2010 3:14:58 PMSubject: Re: Re: Jackie::RE:Goldberg Great post. Have heard heard of stopcallingitautism.com? Your experience could greatly help their cause. Check it out when you have a few : ) Best wishes to you and your family! So happy to hear you're having success!-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 10:43:38 AMSubject: Re: Re: Jackie::RE:Goldberg Allow me to introduce myself, I am Bill Klimas, the father of a son that was classically Autistic and is now a twelve year old on his way to recovery. We are on the NIDS protocol but I did not find it on any list. My son Connors aunt is Dr Klimas, chairman of the immunology department at U of Miami school of medicine and a highly recognized researcher in CSF and related immune based illnesses. After several years of GF/CF diet and tens of thousands of dollars spent on behavioral therapy co-payments, supplements and such to NO progress, she convinced me to work on his immune system and we went the NIDS route. Three years ago on his initial work up his ASO were 450+, his viral tiers were 875+ and so on. It has been an up and down but what I found most convincing that the bases of Autism is an immune dysfunction happened last summer. We had managed to slowly drive down the HHV6 (to 1/40) and ASO (Normal range) numbers using antivirals and antibiotics and saw amazing results, last June my wife started a diet that allowed fresh pineapple and Connor loved it. within a week we saw regression to the worst he has ever been. We had scheduled blood draws the following week and Connors HHV6 had jumped to 1-240 among other off the scale makers. No change in meds just he introduction of an very strong allergin. It was wild but by triggering an immune reaction the antivirals were rendered useless. It took nearly a month t calm his system and him back down and nearly two months to drive the HHV6 back to 1-80.During the XMRV debate I found this quote from a noted immunologist and it just makes sense."There are two broad aspects to the immune system, TH1 and TH2. TH1 involves Natural Killer (NK) cells whose job it is to identify and destroy viruses. The TH2 side of the immune system involves, amongst other things, antibodies which respond to threats. There is evidence in the literature that patients with ME/CFS are “TH2†biased, i.e. the TH2 aspect of the immune system is over-activated, causing suppression of the TH1 side and high levels of inflammatory cytokines; patients have lower Natural Killer (NK) cell immunity. This bias may mean that opportunistic viruses and bacterial infections can no longer be kept at bay effectively by the TH1 side of the system.RNase L conducts a function of holding the virus at bay until NK cells are available to eradicate the pathogen, however even the RNase L’s ability to perform this function can be compromised over time if TH2 dominates for too long. RNase L dysfunction was also reported in the prostate cancer cases of XMRV, although later research has not found a genetic link. In ME/CFS, any suspected Rnase L deficiency many simply be due to chronic TH2 dominance. If TH2 dominates for too long, it can be hypothesised that viruses such as HHV-6, Epstein Barr Virus (EBV), CMV and Parvovirus B19 can flourish, as well as bacterial infections such as mycoplasma and chlamydia pneumonia. It has been established that the majority of neurodegenerative disease, fatiguing illnesses and neurobehavioral disease patients have chronic bacterial and viral infections. (3). In fact the WPI research claimed to have found higher levels of XMRA in “atypical†MS and Autism. "I am not a medical doctor but Connor was always low iron low potassium and so on. As his immune system normalized all of these returned to normal including B12.To: mb12 valtrex Sent: Tue, August 17, 2010 9:26:18 AMSubject: Re: Jackie::RE:Goldberg Jackie, Thrilled to hear about your son's progress! SO happy for you guys. best, sloan > > > > > > > > > > > > Here is a question maybe someone has an answer to: > > > > > > > > > > > > Some have argued that HBOT is dangerous because while it increases the flow > > > > >of > > > > > > > > > > > oxygen to areas of the brain that need it, it also increases the flow of > > > > >oxygen > > > > > > > > > > > to areas that do NOT. > > > > > > > > > > > > SSRI's are used in this instance to increase bloodflow to certain areas of > > > > >the > > > > > > > > > > > brain. It is able to "weed out" exactly which areas to avoid? (unlike > > > > > > hbot)????? > > > > > > > > > > > > Is that correct? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > > > From: "boothlindy@" <boothlindy@> > > > > > > To: mb12 valtrex > > > > > > Sent: Fri, August 13, 2010 2:16:17 PM > > > > > > Subject: RE:Goldberg > > > > > > > > > > > > > > > > > > I am a mother of a 5 year old daughter who has just started (3 months in) the > > > > > > > > > > > NIDS protocol with Dr Goldberg. We worked with 2 DAN doctors for 1.5 years > > > > >with > > > > > > > > > > > good results but hit a wall so to speak. > > > > > > > > > > > > > > > > > > When I wanted to try the virus protocol our DAN said OK gave us the meds a > > > > >piece > > > > > > > > > > > of paper with the info and said to us not much has been done in the virus > > > > >area > > > > > > > > > > > by the medical establishment and it does not work for most kids. Something > > > > >felt > > > > > > > > > > > wrong with her statement so I joined this site and was led to Dr Goldberg by > > > > >a > > > > > > > > > > > passionate mom (Marcia). > > > > > > > > > > > > That said when we first had our appt. I was somewhat taken aback by his take > > > > >on > > > > > > > > > > > DAN being the 'bad guys'. He went on about it for a little too long for my > > > > > > liking ... DAN was there for us when everybody else was saying go home and > > > > > > accept that is how your daughter is going to be. My 'bad guys' were the > > > > >standard > > > > > > > > > > > medical guys pushing the vaccines on my child with a severely and visible > > > > > > compromised immune system. I had to cut him short and say lets get back to > > > > >what > > > > > > > > > > > we came for, my fight is not with DAN but with healing my child. DAN bashing > > > > >as > > > > > > > > > > > I call it feels decidely uncomfortable for me, especially as they recovering > > > > >a > > > > > > > > > > > lot of of children, yes I do feel like because DAN are trying so many bases > > > > > > gut/metals/viral etc the doctors can throw a lot of things at us and for > > > > >those > > > > > > > > > > > of us struggling to study and grasp all the info out there we can tend to > > > > >rely > > > > > > > > > > > heavily on them for it all, hence over supplementing with the fear we are > > > > > > missing something or if we remove some they regress after all our hard won > > > > > > gains. I also think some of the DAN's are overloaded and good follow up > > > > > > proceedures are lacking in their offices. NIDS protocol does not spread > > > > >itself > > > > > > > > > > > so thin. > > > > > > > > > > > > That said Dr Goldberg is a doctor who takes healing your child seriously, > > > > >very > > > > > > > > > > > prepared and is not afraid to speak his mind and offend. I have accepted this > > > > >as > > > > > > > > > > > part of the deal working with him (who wants a wishy washy doctor healing > > > > >your > > > > > > > > > > > child anyway). He is always prepared for our telephone consults, knows my > > > > > > daughter history, and kicks my butt when I was too scared to start the SSRI' > > > > > > > > > > saying I am here to try and heal your child lets not waste time (my > > > > >words...his > > > > > > > > > > > were stronger). > > > > > > > > > > > > I think for many passionate caring doctors who have had great success in > > > > >their > > > > > > > > > > > specific protocols they feel strongly they can take ALL our children to > > > > > > recovery. Having read many a post on many a site I now know this is not so. > > > > >Our > > > > > > > > > > > children are all so different and their issues so variable it indeed may take > > > > > > > > > > > one to many more protocols to get there. > > > > > > > > > > > > > > > > > > Suffice to say we as parents have to stay on our toes and know when to stay > > > > >and > > > > > > > > > > > when to move on (Cheryl's advice to me...thks)....the hard part is knowing > > > > >what > > > > > > > > > > > to do when we are not doctors, just parents with a powerful love in our > > > > >hearts > > > > > > > > > > > to heal our kids and see them flourish in this world. > > > > > > > > > > > > Lindy > > > > > > > > > > > > PS. We have been on the SSRI's for 9 days and the results have been nothing > > > > > > short of amazing for my daughter. We are holding our breaths as we saw > > > > >similar > > > > > > > > > > > results with HBOT which did not hold. Right now I am glad Dr G kicked my > > > > >butt. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 Tammy,My daughter's dev ped did not have much to tell me. She gave me a couple websites (good ones), recommended social stories and then said if my child needed anti-anxiety meds, we could try Tenex. She did refer us to OT for her SPD... oh and recommended omega 3's, and getting books from the CARD lending library in Tampa (30 miles away) So it was good advice... but I had no idea about all the therapies. Had I not come on these yahoo lists, I would not have known about them, even their names... I still don't know much about them. :::sigh::: --- ToniTo: mb12 valtrex Sent: Tue, August 17, 2010 10:43:54 PMSubject: Re: Re: Jackie::RE:Goldberg Oh - your posts don't drive me crazy at all. Western medicine is what drives me crazy. I love hearing success stories and any experience people have to offer. I was refered to an "excellent" allergist who will not even acknowledge the fact that yeast can be an issue. <sigh> He could not see a problem with the deep itching in my son's ear, therefore, the problem does not exist.rrrr. This is the same story over and over. I am very glad that your family had the good fortune to find the right people to help you. My son's speech and hearing assessments were done at the local children's hospital - we were sent home with not even so much as a brochure. It's pathetic. Back then I didn't know the right questions to ask or where to turn for help - now I know better. I've learned a great deal from "do-it-yourselfers" ---much much more than just supplemental treatment. For instance, I didn't even know ABA existed or that there were such things as developmental pediatricians that exist right there in that very hospital. How does that happen???????? I'm appalled at both myself and the "experts" my son is surrounded by. It's crazy. So while I wholeheartedly agree with you that we need more competent doctors on board, our kids don't have time to sit around and wait for them to get up off their a***** : )Be well!-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 9:37:36 PMSubject: Re: Re: Jackie::RE:Goldberg Tammy I am sorry my post drives you crazy but I am not a doctor . I just happen to have a leading immunologist (Not my sons doctor) as a sister and she is willing to explain the complexities of an immune dysfunction in terms I understand. Do not ever believe there is nothing you can do. Follow the breaking research in CSF, Autism and Immune issues and do what you can to help your child develop normally. ABA, speech and then believe that this is not classic Autism and can be treated if you treat the symptoms and ignore the mainstream guys that don't go there. Find a good allergists and check out all of his food and environmental allergies. Then look into a good teaching hospital and ask a leading immunologist to investigate his immune system. The NIDS site can help you argue your case. lastly pray the finger the route cause of the immune disorder.To: mb12 valtrex Sent: Tue, August 17, 2010 9:19:35 PMSubject: Re: Re: Jackie::RE:Goldberg well that is the very thing that just makes me crazy. Western docs freaking out at parents taking matters into their own hands but we are left with no other choice if we ever expect our children to be well. My sons' own pediatrician refused to run any tests. Not one. Even in light of our family history. I guess that was the part where I was supposed to take my son home and allow him to live out the rest of his life unwell because our medical industry is dragging their feet. Some of us do not have the money, resources or luck to continually search out a doctor who actually cares enough to help us try to figure things out. Those are few and far between. Even my old pediatrician - a close friend of my dad - told me in a nutshell as gently as he could to do what I can for son's adhd symptoms - but as far as his more severe spectrum symptoms to just accept it for what it is. What choice are we left?? : (-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 4:30:25 PMSubject: Re: Re: Jackie::RE:Goldberg I wrote the opening page of the SCIA group description, I was a founding board member. I believe that immune issues need to be very closely monitored by proactive board certified immunologists in order to not risk harm to children. The SCIA's position to support parents playing internet doctors without the needed back round has forced me to step away. Immune issues require an understanding beyond a wikipedia education and desperation drives parents (especially new bees) to taking risks that far outweigh benefits of parent developed protocols based on an internet salesmanship offer! Poor medicine and greed made my kid sick. I will not turn to the same mentality to cure him. Don't get me wrong, knowledge is the solution but it is very important to consider the source. Unfortunately the SCIA promotes self diagnosis and often discusses treatment without any basis. If you truly believe this is an immune issue you can understand every kids issues and solutions are different. One size dose not fit all and qualified and informed doctors are the solution, parents need to advocate to change the system so the CCD and the few schooled, certified and informed docs can help direct the evolution of a safe and throughly researched protocol to address this issue. DAN is a mishmash of good docs sharing the same shingle with a bunch of poorly informed and greed driven scoundrels. I know of only a dozen or so that have the understanding and compassion to not risk these kids health in order placate their desperate parents. I can not EVER recommend a parent go find a DAN doctor as a blanket recommendation, Too much damage done. So sad but so true!To: mb12 valtrex Sent: Tue, August 17, 2010 3:14:58 PMSubject: Re: Re: Jackie::RE:Goldberg Great post. Have heard heard of stopcallingitautism.com? Your experience could greatly help their cause. Check it out when you have a few : ) Best wishes to you and your family! So happy to hear you're having success!-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 10:43:38 AMSubject: Re: Re: Jackie::RE:Goldberg Allow me to introduce myself, I am Bill Klimas, the father of a son that was classically Autistic and is now a twelve year old on his way to recovery. We are on the NIDS protocol but I did not find it on any list. My son Connors aunt is Dr Klimas, chairman of the immunology department at U of Miami school of medicine and a highly recognized researcher in CSF and related immune based illnesses. After several years of GF/CF diet and tens of thousands of dollars spent on behavioral therapy co-payments, supplements and such to NO progress, she convinced me to work on his immune system and we went the NIDS route. Three years ago on his initial work up his ASO were 450+, his viral tiers were 875+ and so on. It has been an up and down but what I found most convincing that the bases of Autism is an immune dysfunction happened last summer. We had managed to slowly drive down the HHV6 (to 1/40) and ASO (Normal range) numbers using antivirals and antibiotics and saw amazing results, last June my wife started a diet that allowed fresh pineapple and Connor loved it. within a week we saw regression to the worst he has ever been. We had scheduled blood draws the following week and Connors HHV6 had jumped to 1-240 among other off the scale makers. No change in meds just he introduction of an very strong allergin. It was wild but by triggering an immune reaction the antivirals were rendered useless. It took nearly a month t calm his system and him back down and nearly two months to drive the HHV6 back to 1-80.During the XMRV debate I found this quote from a noted immunologist and it just makes sense."There are two broad aspects to the immune system, TH1 and TH2. TH1 involves Natural Killer (NK) cells whose job it is to identify and destroy viruses. The TH2 side of the immune system involves, amongst other things, antibodies which respond to threats. There is evidence in the literature that patients with ME/CFS are “TH2†biased, i.e. the TH2 aspect of the immune system is over-activated, causing suppression of the TH1 side and high levels of inflammatory cytokines; patients have lower Natural Killer (NK) cell immunity. This bias may mean that opportunistic viruses and bacterial infections can no longer be kept at bay effectively by the TH1 side of the system.RNase L conducts a function of holding the virus at bay until NK cells are available to eradicate the pathogen, however even the RNase L’s ability to perform this function can be compromised over time if TH2 dominates for too long. RNase L dysfunction was also reported in the prostate cancer cases of XMRV, although later research has not found a genetic link. In ME/CFS, any suspected Rnase L deficiency many simply be due to chronic TH2 dominance. If TH2 dominates for too long, it can be hypothesised that viruses such as HHV-6, Epstein Barr Virus (EBV), CMV and Parvovirus B19 can flourish, as well as bacterial infections such as mycoplasma and chlamydia pneumonia. It has been established that the majority of neurodegenerative disease, fatiguing illnesses and neurobehavioral disease patients have chronic bacterial and viral infections. (3). In fact the WPI research claimed to have found higher levels of XMRA in “atypical†MS and Autism. "I am not a medical doctor but Connor was always low iron low potassium and so on. As his immune system normalized all of these returned to normal including B12.To: mb12 valtrex Sent: Tue, August 17, 2010 9:26:18 AMSubject: Re: Jackie::RE:Goldberg Jackie, Thrilled to hear about your son's progress! SO happy for you guys. best, sloan > > > > > > > > > > > > Here is a question maybe someone has an answer to: > > > > > > > > > > > > Some have argued that HBOT is dangerous because while it increases the flow > > > > >of > > > > > > > > > > > oxygen to areas of the brain that need it, it also increases the flow of > > > > >oxygen > > > > > > > > > > > to areas that do NOT. > > > > > > > > > > > > SSRI's are used in this instance to increase bloodflow to certain areas of > > > > >the > > > > > > > > > > > brain. It is able to "weed out" exactly which areas to avoid? (unlike > > > > > > hbot)????? > > > > > > > > > > > > Is that correct? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > > > From: "boothlindy@" <boothlindy@> > > > > > > To: mb12 valtrex > > > > > > Sent: Fri, August 13, 2010 2:16:17 PM > > > > > > Subject: RE:Goldberg > > > > > > > > > > > > > > > > > > I am a mother of a 5 year old daughter who has just started (3 months in) the > > > > > > > > > > > NIDS protocol with Dr Goldberg. We worked with 2 DAN doctors for 1.5 years > > > > >with > > > > > > > > > > > good results but hit a wall so to speak. > > > > > > > > > > > > > > > > > > When I wanted to try the virus protocol our DAN said OK gave us the meds a > > > > >piece > > > > > > > > > > > of paper with the info and said to us not much has been done in the virus > > > > >area > > > > > > > > > > > by the medical establishment and it does not work for most kids. Something > > > > >felt > > > > > > > > > > > wrong with her statement so I joined this site and was led to Dr Goldberg by > > > > >a > > > > > > > > > > > passionate mom (Marcia). > > > > > > > > > > > > That said when we first had our appt. I was somewhat taken aback by his take > > > > >on > > > > > > > > > > > DAN being the 'bad guys'. He went on about it for a little too long for my > > > > > > liking ... DAN was there for us when everybody else was saying go home and > > > > > > accept that is how your daughter is going to be. My 'bad guys' were the > > > > >standard > > > > > > > > > > > medical guys pushing the vaccines on my child with a severely and visible > > > > > > compromised immune system. I had to cut him short and say lets get back to > > > > >what > > > > > > > > > > > we came for, my fight is not with DAN but with healing my child. DAN bashing > > > > >as > > > > > > > > > > > I call it feels decidely uncomfortable for me, especially as they recovering > > > > >a > > > > > > > > > > > lot of of children, yes I do feel like because DAN are trying so many bases > > > > > > gut/metals/viral etc the doctors can throw a lot of things at us and for > > > > >those > > > > > > > > > > > of us struggling to study and grasp all the info out there we can tend to > > > > >rely > > > > > > > > > > > heavily on them for it all, hence over supplementing with the fear we are > > > > > > missing something or if we remove some they regress after all our hard won > > > > > > gains. I also think some of the DAN's are overloaded and good follow up > > > > > > proceedures are lacking in their offices. NIDS protocol does not spread > > > > >itself > > > > > > > > > > > so thin. > > > > > > > > > > > > That said Dr Goldberg is a doctor who takes healing your child seriously, > > > > >very > > > > > > > > > > > prepared and is not afraid to speak his mind and offend. I have accepted this > > > > >as > > > > > > > > > > > part of the deal working with him (who wants a wishy washy doctor healing > > > > >your > > > > > > > > > > > child anyway). He is always prepared for our telephone consults, knows my > > > > > > daughter history, and kicks my butt when I was too scared to start the SSRI' > > > > > > > > > > saying I am here to try and heal your child lets not waste time (my > > > > >words...his > > > > > > > > > > > were stronger). > > > > > > > > > > > > I think for many passionate caring doctors who have had great success in > > > > >their > > > > > > > > > > > specific protocols they feel strongly they can take ALL our children to > > > > > > recovery. Having read many a post on many a site I now know this is not so. > > > > >Our > > > > > > > > > > > children are all so different and their issues so variable it indeed may take > > > > > > > > > > > one to many more protocols to get there. > > > > > > > > > > > > > > > > > > Suffice to say we as parents have to stay on our toes and know when to stay > > > > >and > > > > > > > > > > > when to move on (Cheryl's advice to me...thks)....the hard part is knowing > > > > >what > > > > > > > > > > > to do when we are not doctors, just parents with a powerful love in our > > > > >hearts > > > > > > > > > > > to heal our kids and see them flourish in this world. > > > > > > > > > > > > Lindy > > > > > > > > > > > > PS. We have been on the SSRI's for 9 days and the results have been nothing > > > > > > short of amazing for my daughter. We are holding our breaths as we saw > > > > >similar > > > > > > > > > > > results with HBOT which did not hold. Right now I am glad Dr G kicked my > > > > >butt. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 That was way more information than I was ever given. Though that's what I would expect at minimum from any dime-a-dozen pediatrician - I would hope for a little bit more from a specialist.I'm telling you, I honest to God feel like I've had my head buried in the sand. Don't doctors have to do some sort of professional development every year or so the way everyone else has to? They must. And Autism must come up at some point ....so exactly what do those presentations look like????? I can't imagine what the **** they must be talking about?????? "Today's Presentation....guilt tripping for vaccination" I don't get it.You had to see absolute look of astonishment and horror on my grandson's pedi's face when I mentioned human tissue in vaccines. the man was truly shocked and I believe 100% that he was not lying when he said that he never heard of such a thing. He must've been absent that day at Med school. He also assured me that he thoroughly investigated vaccines before giving them to his own children. I'd say he's never met dr. google lol. I made sure they were introduced and sent in plenty of reading material for him at my grandson's next appt : ) To: mb12 valtrex Sent: Tue, August 17, 2010 11:42:51 PMSubject: Re: Re: Jackie::RE:Goldberg Tammy,My daughter's dev ped did not have much to tell me. She gave me a couple websites (good ones), recommended social stories and then said if my child needed anti-anxiety meds, we could try Tenex. She did refer us to OT for her SPD... oh and recommended omega 3's, and getting books from the CARD lending library in Tampa (30 miles away) So it was good advice... but I had no idea about all the therapies. Had I not come on these yahoo lists, I would not have known about them, even their names... I still don't know much about them. :::sigh::: --- ToniTo: mb12 valtrex Sent: Tue, August 17, 2010 10:43:54 PMSubject: Re: Re: Jackie::RE:Goldberg Oh - your posts don't drive me crazy at all. Western medicine is what drives me crazy. I love hearing success stories and any experience people have to offer. I was refered to an "excellent" allergist who will not even acknowledge the fact that yeast can be an issue. <sigh> He could not see a problem with the deep itching in my son's ear, therefore, the problem does not exist.rrrr. This is the same story over and over. I am very glad that your family had the good fortune to find the right people to help you. My son's speech and hearing assessments were done at the local children's hospital - we were sent home with not even so much as a brochure. It's pathetic. Back then I didn't know the right questions to ask or where to turn for help - now I know better. I've learned a great deal from "do-it-yourselfers" ---much much more than just supplemental treatment. For instance, I didn't even know ABA existed or that there were such things as developmental pediatricians that exist right there in that very hospital. How does that happen???????? I'm appalled at both myself and the "experts" my son is surrounded by. It's crazy. So while I wholeheartedly agree with you that we need more competent doctors on board, our kids don't have time to sit around and wait for them to get up off their a***** : )Be well!-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 9:37:36 PMSubject: Re: Re: Jackie::RE:Goldberg Tammy I am sorry my post drives you crazy but I am not a doctor . I just happen to have a leading immunologist (Not my sons doctor) as a sister and she is willing to explain the complexities of an immune dysfunction in terms I understand. Do not ever believe there is nothing you can do. Follow the breaking research in CSF, Autism and Immune issues and do what you can to help your child develop normally. ABA, speech and then believe that this is not classic Autism and can be treated if you treat the symptoms and ignore the mainstream guys that don't go there. Find a good allergists and check out all of his food and environmental allergies. Then look into a good teaching hospital and ask a leading immunologist to investigate his immune system. The NIDS site can help you argue your case. lastly pray the finger the route cause of the immune disorder.To: mb12 valtrex Sent: Tue, August 17, 2010 9:19:35 PMSubject: Re: Re: Jackie::RE:Goldberg well that is the very thing that just makes me crazy. Western docs freaking out at parents taking matters into their own hands but we are left with no other choice if we ever expect our children to be well. My sons' own pediatrician refused to run any tests. Not one. Even in light of our family history. I guess that was the part where I was supposed to take my son home and allow him to live out the rest of his life unwell because our medical industry is dragging their feet. Some of us do not have the money, resources or luck to continually search out a doctor who actually cares enough to help us try to figure things out. Those are few and far between. Even my old pediatrician - a close friend of my dad - told me in a nutshell as gently as he could to do what I can for son's adhd symptoms - but as far as his more severe spectrum symptoms to just accept it for what it is. What choice are we left?? : (-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 4:30:25 PMSubject: Re: Re: Jackie::RE:Goldberg I wrote the opening page of the SCIA group description, I was a founding board member. I believe that immune issues need to be very closely monitored by proactive board certified immunologists in order to not risk harm to children. The SCIA's position to support parents playing internet doctors without the needed back round has forced me to step away. Immune issues require an understanding beyond a wikipedia education and desperation drives parents (especially new bees) to taking risks that far outweigh benefits of parent developed protocols based on an internet salesmanship offer! Poor medicine and greed made my kid sick. I will not turn to the same mentality to cure him. Don't get me wrong, knowledge is the solution but it is very important to consider the source. Unfortunately the SCIA promotes self diagnosis and often discusses treatment without any basis. If you truly believe this is an immune issue you can understand every kids issues and solutions are different. One size dose not fit all and qualified and informed doctors are the solution, parents need to advocate to change the system so the CCD and the few schooled, certified and informed docs can help direct the evolution of a safe and throughly researched protocol to address this issue. DAN is a mishmash of good docs sharing the same shingle with a bunch of poorly informed and greed driven scoundrels. I know of only a dozen or so that have the understanding and compassion to not risk these kids health in order placate their desperate parents. I can not EVER recommend a parent go find a DAN doctor as a blanket recommendation, Too much damage done. So sad but so true!To: mb12 valtrex Sent: Tue, August 17, 2010 3:14:58 PMSubject: Re: Re: Jackie::RE:Goldberg Great post. Have heard heard of stopcallingitautism.com? Your experience could greatly help their cause. Check it out when you have a few : ) Best wishes to you and your family! So happy to hear you're having success!-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 10:43:38 AMSubject: Re: Re: Jackie::RE:Goldberg Allow me to introduce myself, I am Bill Klimas, the father of a son that was classically Autistic and is now a twelve year old on his way to recovery. We are on the NIDS protocol but I did not find it on any list. My son Connors aunt is Dr Klimas, chairman of the immunology department at U of Miami school of medicine and a highly recognized researcher in CSF and related immune based illnesses. After several years of GF/CF diet and tens of thousands of dollars spent on behavioral therapy co-payments, supplements and such to NO progress, she convinced me to work on his immune system and we went the NIDS route. Three years ago on his initial work up his ASO were 450+, his viral tiers were 875+ and so on. It has been an up and down but what I found most convincing that the bases of Autism is an immune dysfunction happened last summer. We had managed to slowly drive down the HHV6 (to 1/40) and ASO (Normal range) numbers using antivirals and antibiotics and saw amazing results, last June my wife started a diet that allowed fresh pineapple and Connor loved it. within a week we saw regression to the worst he has ever been. We had scheduled blood draws the following week and Connors HHV6 had jumped to 1-240 among other off the scale makers. No change in meds just he introduction of an very strong allergin. It was wild but by triggering an immune reaction the antivirals were rendered useless. It took nearly a month t calm his system and him back down and nearly two months to drive the HHV6 back to 1-80.During the XMRV debate I found this quote from a noted immunologist and it just makes sense."There are two broad aspects to the immune system, TH1 and TH2. TH1 involves Natural Killer (NK) cells whose job it is to identify and destroy viruses. The TH2 side of the immune system involves, amongst other things, antibodies which respond to threats. There is evidence in the literature that patients with ME/CFS are “TH2†biased, i.e. the TH2 aspect of the immune system is over-activated, causing suppression of the TH1 side and high levels of inflammatory cytokines; patients have lower Natural Killer (NK) cell immunity. This bias may mean that opportunistic viruses and bacterial infections can no longer be kept at bay effectively by the TH1 side of the system.RNase L conducts a function of holding the virus at bay until NK cells are available to eradicate the pathogen, however even the RNase L’s ability to perform this function can be compromised over time if TH2 dominates for too long. RNase L dysfunction was also reported in the prostate cancer cases of XMRV, although later research has not found a genetic link. In ME/CFS, any suspected Rnase L deficiency many simply be due to chronic TH2 dominance. If TH2 dominates for too long, it can be hypothesised that viruses such as HHV-6, Epstein Barr Virus (EBV), CMV and Parvovirus B19 can flourish, as well as bacterial infections such as mycoplasma and chlamydia pneumonia. It has been established that the majority of neurodegenerative disease, fatiguing illnesses and neurobehavioral disease patients have chronic bacterial and viral infections. (3). In fact the WPI research claimed to have found higher levels of XMRA in “atypical†MS and Autism. "I am not a medical doctor but Connor was always low iron low potassium and so on. As his immune system normalized all of these returned to normal including B12.To: mb12 valtrex Sent: Tue, August 17, 2010 9:26:18 AMSubject: Re: Jackie::RE:Goldberg Jackie, Thrilled to hear about your son's progress! SO happy for you guys. best, sloan > > > > > > > > > > > > Here is a question maybe someone has an answer to: > > > > > > > > > > > > Some have argued that HBOT is dangerous because while it increases the flow > > > > >of > > > > > > > > > > > oxygen to areas of the brain that need it, it also increases the flow of > > > > >oxygen > > > > > > > > > > > to areas that do NOT. > > > > > > > > > > > > SSRI's are used in this instance to increase bloodflow to certain areas of > > > > >the > > > > > > > > > > > brain. It is able to "weed out" exactly which areas to avoid? (unlike > > > > > > hbot)????? > > > > > > > > > > > > Is that correct? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > > > From: "boothlindy@" <boothlindy@> > > > > > > To: mb12 valtrex > > > > > > Sent: Fri, August 13, 2010 2:16:17 PM > > > > > > Subject: RE:Goldberg > > > > > > > > > > > > > > > > > > I am a mother of a 5 year old daughter who has just started (3 months in) the > > > > > > > > > > > NIDS protocol with Dr Goldberg. We worked with 2 DAN doctors for 1.5 years > > > > >with > > > > > > > > > > > good results but hit a wall so to speak. > > > > > > > > > > > > > > > > > > When I wanted to try the virus protocol our DAN said OK gave us the meds a > > > > >piece > > > > > > > > > > > of paper with the info and said to us not much has been done in the virus > > > > >area > > > > > > > > > > > by the medical establishment and it does not work for most kids. Something > > > > >felt > > > > > > > > > > > wrong with her statement so I joined this site and was led to Dr Goldberg by > > > > >a > > > > > > > > > > > passionate mom (Marcia). > > > > > > > > > > > > That said when we first had our appt. I was somewhat taken aback by his take > > > > >on > > > > > > > > > > > DAN being the 'bad guys'. He went on about it for a little too long for my > > > > > > liking ... DAN was there for us when everybody else was saying go home and > > > > > > accept that is how your daughter is going to be. My 'bad guys' were the > > > > >standard > > > > > > > > > > > medical guys pushing the vaccines on my child with a severely and visible > > > > > > compromised immune system. I had to cut him short and say lets get back to > > > > >what > > > > > > > > > > > we came for, my fight is not with DAN but with healing my child. DAN bashing > > > > >as > > > > > > > > > > > I call it feels decidely uncomfortable for me, especially as they recovering > > > > >a > > > > > > > > > > > lot of of children, yes I do feel like because DAN are trying so many bases > > > > > > gut/metals/viral etc the doctors can throw a lot of things at us and for > > > > >those > > > > > > > > > > > of us struggling to study and grasp all the info out there we can tend to > > > > >rely > > > > > > > > > > > heavily on them for it all, hence over supplementing with the fear we are > > > > > > missing something or if we remove some they regress after all our hard won > > > > > > gains. I also think some of the DAN's are overloaded and good follow up > > > > > > proceedures are lacking in their offices. NIDS protocol does not spread > > > > >itself > > > > > > > > > > > so thin. > > > > > > > > > > > > That said Dr Goldberg is a doctor who takes healing your child seriously, > > > > >very > > > > > > > > > > > prepared and is not afraid to speak his mind and offend. I have accepted this > > > > >as > > > > > > > > > > > part of the deal working with him (who wants a wishy washy doctor healing > > > > >your > > > > > > > > > > > child anyway). He is always prepared for our telephone consults, knows my > > > > > > daughter history, and kicks my butt when I was too scared to start the SSRI' > > > > > > > > > > saying I am here to try and heal your child lets not waste time (my > > > > >words...his > > > > > > > > > > > were stronger). > > > > > > > > > > > > I think for many passionate caring doctors who have had great success in > > > > >their > > > > > > > > > > > specific protocols they feel strongly they can take ALL our children to > > > > > > recovery. Having read many a post on many a site I now know this is not so. > > > > >Our > > > > > > > > > > > children are all so different and their issues so variable it indeed may take > > > > > > > > > > > one to many more protocols to get there. > > > > > > > > > > > > > > > > > > Suffice to say we as parents have to stay on our toes and know when to stay > > > > >and > > > > > > > > > > > when to move on (Cheryl's advice to me...thks)....the hard part is knowing > > > > >what > > > > > > > > > > > to do when we are not doctors, just parents with a powerful love in our > > > > >hearts > > > > > > > > > > > to heal our kids and see them flourish in this world. > > > > > > > > > > > > Lindy > > > > > > > > > > > > PS. We have been on the SSRI's for 9 days and the results have been nothing > > > > > > short of amazing for my daughter. We are holding our breaths as we saw > > > > >similar > > > > > > > > > > > results with HBOT which did not hold. Right now I am glad Dr G kicked my > > > > >butt. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 What? We have used allergists, what a joke! The teaching hospital near me is suppose to be on the top 10 list in the U.S., and their autism department told me that they have no idea about recovery. They just diagnose. What we do to recover our kids is use doctors that others tell us recovered their kids. We go by results, not titles, not prestige. Love and prayers, Heidi N Find a good allergists and check out all of his food and environmental allergies. Then look into a good teaching hospital and ask a leading immunologist to investigate his immune system. The NIDS site can help you argue your case. lastly pray the finger the route cause of the immune disorder. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 In order to address recovery, they would have to address vaccinations and the poisons they contain and the horrible reactions some children have to them. They would have to address the approach our entire culture has developed to health and wellness...rx, rx, rx. ($,$,$) And they would have to go after the food industry. So I don't see it happening. Most are not willing to throw away all that time, money and hard work they put into med school to be shunned by their peers when they go against the grain. It's like asking them to go against everything that's been drilled into their brains for 8+ years. It's asking them to give up the house on the hill and a membership at the country club. And to be honest, most people in our society today do not care to know the truth because it might interfere with their convenient life style. It's gotten to the point where no one bats an eye at the mom who hands her kid a twinkie and a kool aid. But there's something wrong with you if you DON'T. Go figure.To: mb12 valtrex Sent: Wed, August 18, 2010 12:31:36 AMSubject: Re: Jackie::RE:Goldberg What? We have used allergists, what a joke! The teaching hospital near me is suppose to be on the top 10 list in the U.S., and their autism department told me that they have no idea about recovery. They just diagnose. What we do to recover our kids is use doctors that others tell us recovered their kids. We go by results, not titles, not prestige. Love and prayers, Heidi N Find a good allergists and check out all of his food and environmental allergies. Then look into a good teaching hospital and ask a leading immunologist to investigate his immune system. The NIDS site can help you argue your case. lastly pray the finger the route cause of the immune disorder. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 Our allergist was a joke, too. "Nope. Nothing's there. Everything looks fine. Come back if you have any problems" okayyyyy buddy, we have a problem NOW - that's why we're here. If you can't be bothered to take more than 30 seconds to figure out THIS problem, why would I ever come back to you for ANOTHER problem????????? It makes me crazy.To: mb12 valtrex Sent: Wed, August 18, 2010 12:51:21 AMSubject: Re: Re: Jackie::RE:Goldberg In order to address recovery, they would have to address vaccinations and the poisons they contain and the horrible reactions some children have to them. They would have to address the approach our entire culture has developed to health and wellness...rx, rx, rx. ($,$,$) And they would have to go after the food industry. So I don't see it happening. Most are not willing to throw away all that time, money and hard work they put into med school to be shunned by their peers when they go against the grain. It's like asking them to go against everything that's been drilled into their brains for 8+ years. It's asking them to give up the house on the hill and a membership at the country club. And to be honest, most people in our society today do not care to know the truth because it might interfere with their convenient life style. It's gotten to the point where no one bats an eye at the mom who hands her kid a twinkie and a kool aid. But there's something wrong with you if you DON'T. Go figure.To: mb12 valtrex Sent: Wed, August 18, 2010 12:31:36 AMSubject: Re: Jackie::RE:Goldberg What? We have used allergists, what a joke! The teaching hospital near me is suppose to be on the top 10 list in the U.S., and their autism department told me that they have no idea about recovery. They just diagnose. What we do to recover our kids is use doctors that others tell us recovered their kids. We go by results, not titles, not prestige. Love and prayers, Heidi N Find a good allergists and check out all of his food and environmental allergies. Then look into a good teaching hospital and ask a leading immunologist to investigate his immune system. The NIDS site can help you argue your case. lastly pray the finger the route cause of the immune disorder. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 And while I'm at it....since when has it become acceptable for a surgeon not to come out and talk to a patient's family after minor sugery or invasive testing is preformed? Honest to God, it's happening around here in RI. Any experience I've had with it has not been any sort of major surgery, but still.....we get the major bill. So they could atleast pop their heads in and touch base. Unbelievable.From: T Lynn To: mb12 valtrex Sent: Wed, August 18, 2010 12:56:57 AMSubject: Re: Re: Jackie::RE:Goldberg Our allergist was a joke, too. "Nope. Nothing's there. Everything looks fine. Come back if you have any problems" okayyyyy buddy, we have a problem NOW - that's why we're here. If you can't be bothered to take more than 30 seconds to figure out THIS problem, why would I ever come back to you for ANOTHER problem????????? It makes me crazy.To: mb12 valtrex Sent: Wed, August 18, 2010 12:51:21 AMSubject: Re: Re: Jackie::RE:Goldberg In order to address recovery, they would have to address vaccinations and the poisons they contain and the horrible reactions some children have to them. They would have to address the approach our entire culture has developed to health and wellness...rx, rx, rx. ($,$,$) And they would have to go after the food industry. So I don't see it happening. Most are not willing to throw away all that time, money and hard work they put into med school to be shunned by their peers when they go against the grain. It's like asking them to go against everything that's been drilled into their brains for 8+ years. It's asking them to give up the house on the hill and a membership at the country club. And to be honest, most people in our society today do not care to know the truth because it might interfere with their convenient life style. It's gotten to the point where no one bats an eye at the mom who hands her kid a twinkie and a kool aid. But there's something wrong with you if you DON'T. Go figure.To: mb12 valtrex Sent: Wed, August 18, 2010 12:31:36 AMSubject: Re: Jackie::RE:Goldberg What? We have used allergists, what a joke! The teaching hospital near me is suppose to be on the top 10 list in the U.S., and their autism department told me that they have no idea about recovery. They just diagnose. What we do to recover our kids is use doctors that others tell us recovered their kids. We go by results, not titles, not prestige. Love and prayers, Heidi N Find a good allergists and check out all of his food and environmental allergies. Then look into a good teaching hospital and ask a leading immunologist to investigate his immune system. The NIDS site can help you argue your case. lastly pray the finger the route cause of the immune disorder. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 I went to pharmacy school (1990's) for a couple years (dropped out! now I compound my own kid's pills LOL), and a lot of classes were combined with the med students. Never once discussed the contents of vaccines. But darn if I couldn't draw a molecule?!!! WTH. Yeah, a whole class based on such important matters as being able to see the word "diphenhydramine" and be able to draw the molecule. Sorta like the equivalent of diagramming a sentence... Diagramming a sentence is to writing a novel as is drawing a molecule is to treating a patient.... meaning completely worthless. The concept was that a person could know what two drugs' looked like molecularly, and then determine whether or not the two drugs would have a potentially fatal interaction. Please let me know if you have ever gone to the pharmacy or physician, and had them draw out pictures of your medications in molecular form, and then determine if they'd have a potential interaction.... I don't think you've seen that.... I am sure vaccine discussion goes like this:One slide: "Measles and pertussis epidemics are on the rise. Stress the importance of getting the vaccinations on time."Next topic... next slide... --- ToniTo: mb12 valtrex Sent: Wed, August 18, 2010 12:24:14 AMSubject: Re: Re: Jackie::RE:Goldberg That was way more information than I was ever given. Though that's what I would expect at minimum from any dime-a-dozen pediatrician - I would hope for a little bit more from a specialist.I'm telling you, I honest to God feel like I've had my head buried in the sand. Don't doctors have to do some sort of professional development every year or so the way everyone else has to? They must. And Autism must come up at some point ....so exactly what do those presentations look like????? I can't imagine what the **** they must be talking about?????? "Today's Presentation....guilt tripping for vaccination" I don't get it.You had to see absolute look of astonishment and horror on my grandson's pedi's face when I mentioned human tissue in vaccines. the man was truly shocked and I believe 100% that he was not lying when he said that he never heard of such a thing. He must've been absent that day at Med school. He also assured me that he thoroughly investigated vaccines before giving them to his own children. I'd say he's never met dr. google lol. I made sure they were introduced and sent in plenty of reading material for him at my grandson's next appt : ) To: mb12 valtrex Sent: Tue, August 17, 2010 11:42:51 PMSubject: Re: Re: Jackie::RE:Goldberg Tammy,My daughter's dev ped did not have much to tell me. She gave me a couple websites (good ones), recommended social stories and then said if my child needed anti-anxiety meds, we could try Tenex. She did refer us to OT for her SPD... oh and recommended omega 3's, and getting books from the CARD lending library in Tampa (30 miles away) So it was good advice... but I had no idea about all the therapies. Had I not come on these yahoo lists, I would not have known about them, even their names... I still don't know much about them. :::sigh::: --- ToniTo: mb12 valtrex Sent: Tue, August 17, 2010 10:43:54 PMSubject: Re: Re: Jackie::RE:Goldberg Oh - your posts don't drive me crazy at all. Western medicine is what drives me crazy. I love hearing success stories and any experience people have to offer. I was refered to an "excellent" allergist who will not even acknowledge the fact that yeast can be an issue. <sigh> He could not see a problem with the deep itching in my son's ear, therefore, the problem does not exist.rrrr. This is the same story over and over. I am very glad that your family had the good fortune to find the right people to help you. My son's speech and hearing assessments were done at the local children's hospital - we were sent home with not even so much as a brochure. It's pathetic. Back then I didn't know the right questions to ask or where to turn for help - now I know better. I've learned a great deal from "do-it-yourselfers" ---much much more than just supplemental treatment. For instance, I didn't even know ABA existed or that there were such things as developmental pediatricians that exist right there in that very hospital. How does that happen???????? I'm appalled at both myself and the "experts" my son is surrounded by. It's crazy. So while I wholeheartedly agree with you that we need more competent doctors on board, our kids don't have time to sit around and wait for them to get up off their a***** : )Be well!-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 9:37:36 PMSubject: Re: Re: Jackie::RE:Goldberg Tammy I am sorry my post drives you crazy but I am not a doctor . I just happen to have a leading immunologist (Not my sons doctor) as a sister and she is willing to explain the complexities of an immune dysfunction in terms I understand. Do not ever believe there is nothing you can do. Follow the breaking research in CSF, Autism and Immune issues and do what you can to help your child develop normally. ABA, speech and then believe that this is not classic Autism and can be treated if you treat the symptoms and ignore the mainstream guys that don't go there. Find a good allergists and check out all of his food and environmental allergies. Then look into a good teaching hospital and ask a leading immunologist to investigate his immune system. The NIDS site can help you argue your case. lastly pray the finger the route cause of the immune disorder.To: mb12 valtrex Sent: Tue, August 17, 2010 9:19:35 PMSubject: Re: Re: Jackie::RE:Goldberg well that is the very thing that just makes me crazy. Western docs freaking out at parents taking matters into their own hands but we are left with no other choice if we ever expect our children to be well. My sons' own pediatrician refused to run any tests. Not one. Even in light of our family history. I guess that was the part where I was supposed to take my son home and allow him to live out the rest of his life unwell because our medical industry is dragging their feet. Some of us do not have the money, resources or luck to continually search out a doctor who actually cares enough to help us try to figure things out. Those are few and far between. Even my old pediatrician - a close friend of my dad - told me in a nutshell as gently as he could to do what I can for son's adhd symptoms - but as far as his more severe spectrum symptoms to just accept it for what it is. What choice are we left?? : (-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 4:30:25 PMSubject: Re: Re: Jackie::RE:Goldberg I wrote the opening page of the SCIA group description, I was a founding board member. I believe that immune issues need to be very closely monitored by proactive board certified immunologists in order to not risk harm to children. The SCIA's position to support parents playing internet doctors without the needed back round has forced me to step away. Immune issues require an understanding beyond a wikipedia education and desperation drives parents (especially new bees) to taking risks that far outweigh benefits of parent developed protocols based on an internet salesmanship offer! Poor medicine and greed made my kid sick. I will not turn to the same mentality to cure him. Don't get me wrong, knowledge is the solution but it is very important to consider the source. Unfortunately the SCIA promotes self diagnosis and often discusses treatment without any basis. If you truly believe this is an immune issue you can understand every kids issues and solutions are different. One size dose not fit all and qualified and informed doctors are the solution, parents need to advocate to change the system so the CCD and the few schooled, certified and informed docs can help direct the evolution of a safe and throughly researched protocol to address this issue. DAN is a mishmash of good docs sharing the same shingle with a bunch of poorly informed and greed driven scoundrels. I know of only a dozen or so that have the understanding and compassion to not risk these kids health in order placate their desperate parents. I can not EVER recommend a parent go find a DAN doctor as a blanket recommendation, Too much damage done. So sad but so true!To: mb12 valtrex Sent: Tue, August 17, 2010 3:14:58 PMSubject: Re: Re: Jackie::RE:Goldberg Great post. Have heard heard of stopcallingitautism.com? Your experience could greatly help their cause. Check it out when you have a few : ) Best wishes to you and your family! So happy to hear you're having success!-TammyTo: mb12 valtrex Sent: Tue, August 17, 2010 10:43:38 AMSubject: Re: Re: Jackie::RE:Goldberg Allow me to introduce myself, I am Bill Klimas, the father of a son that was classically Autistic and is now a twelve year old on his way to recovery. We are on the NIDS protocol but I did not find it on any list. My son Connors aunt is Dr Klimas, chairman of the immunology department at U of Miami school of medicine and a highly recognized researcher in CSF and related immune based illnesses. After several years of GF/CF diet and tens of thousands of dollars spent on behavioral therapy co-payments, supplements and such to NO progress, she convinced me to work on his immune system and we went the NIDS route. Three years ago on his initial work up his ASO were 450+, his viral tiers were 875+ and so on. It has been an up and down but what I found most convincing that the bases of Autism is an immune dysfunction happened last summer. We had managed to slowly drive down the HHV6 (to 1/40) and ASO (Normal range) numbers using antivirals and antibiotics and saw amazing results, last June my wife started a diet that allowed fresh pineapple and Connor loved it. within a week we saw regression to the worst he has ever been. We had scheduled blood draws the following week and Connors HHV6 had jumped to 1-240 among other off the scale makers. No change in meds just he introduction of an very strong allergin. It was wild but by triggering an immune reaction the antivirals were rendered useless. It took nearly a month t calm his system and him back down and nearly two months to drive the HHV6 back to 1-80.During the XMRV debate I found this quote from a noted immunologist and it just makes sense."There are two broad aspects to the immune system, TH1 and TH2. TH1 involves Natural Killer (NK) cells whose job it is to identify and destroy viruses. The TH2 side of the immune system involves, amongst other things, antibodies which respond to threats. There is evidence in the literature that patients with ME/CFS are “TH2†biased, i.e. the TH2 aspect of the immune system is over-activated, causing suppression of the TH1 side and high levels of inflammatory cytokines; patients have lower Natural Killer (NK) cell immunity. This bias may mean that opportunistic viruses and bacterial infections can no longer be kept at bay effectively by the TH1 side of the system.RNase L conducts a function of holding the virus at bay until NK cells are available to eradicate the pathogen, however even the RNase L’s ability to perform this function can be compromised over time if TH2 dominates for too long. RNase L dysfunction was also reported in the prostate cancer cases of XMRV, although later research has not found a genetic link. In ME/CFS, any suspected Rnase L deficiency many simply be due to chronic TH2 dominance. If TH2 dominates for too long, it can be hypothesised that viruses such as HHV-6, Epstein Barr Virus (EBV), CMV and Parvovirus B19 can flourish, as well as bacterial infections such as mycoplasma and chlamydia pneumonia. It has been established that the majority of neurodegenerative disease, fatiguing illnesses and neurobehavioral disease patients have chronic bacterial and viral infections. (3). In fact the WPI research claimed to have found higher levels of XMRA in “atypical†MS and Autism. "I am not a medical doctor but Connor was always low iron low potassium and so on. As his immune system normalized all of these returned to normal including B12.To: mb12 valtrex Sent: Tue, August 17, 2010 9:26:18 AMSubject: Re: Jackie::RE:Goldberg Jackie, Thrilled to hear about your son's progress! SO happy for you guys. best, sloan > > > > > > > > > > > > Here is a question maybe someone has an answer to: > > > > > > > > > > > > Some have argued that HBOT is dangerous because while it increases the flow > > > > >of > > > > > > > > > > > oxygen to areas of the brain that need it, it also increases the flow of > > > > >oxygen > > > > > > > > > > > to areas that do NOT. > > > > > > > > > > > > SSRI's are used in this instance to increase bloodflow to certain areas of > > > > >the > > > > > > > > > > > brain. It is able to "weed out" exactly which areas to avoid? (unlike > > > > > > hbot)????? > > > > > > > > > > > > Is that correct? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > > > > From: "boothlindy@" <boothlindy@> > > > > > > To: mb12 valtrex > > > > > > Sent: Fri, August 13, 2010 2:16:17 PM > > > > > > Subject: RE:Goldberg > > > > > > > > > > > > > > > > > > I am a mother of a 5 year old daughter who has just started (3 months in) the > > > > > > > > > > > NIDS protocol with Dr Goldberg. We worked with 2 DAN doctors for 1.5 years > > > > >with > > > > > > > > > > > good results but hit a wall so to speak. > > > > > > > > > > > > > > > > > > When I wanted to try the virus protocol our DAN said OK gave us the meds a > > > > >piece > > > > > > > > > > > of paper with the info and said to us not much has been done in the virus > > > > >area > > > > > > > > > > > by the medical establishment and it does not work for most kids. Something > > > > >felt > > > > > > > > > > > wrong with her statement so I joined this site and was led to Dr Goldberg by > > > > >a > > > > > > > > > > > passionate mom (Marcia). > > > > > > > > > > > > That said when we first had our appt. I was somewhat taken aback by his take > > > > >on > > > > > > > > > > > DAN being the 'bad guys'. He went on about it for a little too long for my > > > > > > liking ... DAN was there for us when everybody else was saying go home and > > > > > > accept that is how your daughter is going to be. My 'bad guys' were the > > > > >standard > > > > > > > > > > > medical guys pushing the vaccines on my child with a severely and visible > > > > > > compromised immune system. I had to cut him short and say lets get back to > > > > >what > > > > > > > > > > > we came for, my fight is not with DAN but with healing my child. DAN bashing > > > > >as > > > > > > > > > > > I call it feels decidely uncomfortable for me, especially as they recovering > > > > >a > > > > > > > > > > > lot of of children, yes I do feel like because DAN are trying so many bases > > > > > > gut/metals/viral etc the doctors can throw a lot of things at us and for > > > > >those > > > > > > > > > > > of us struggling to study and grasp all the info out there we can tend to > > > > >rely > > > > > > > > > > > heavily on them for it all, hence over supplementing with the fear we are > > > > > > missing something or if we remove some they regress after all our hard won > > > > > > gains. I also think some of the DAN's are overloaded and good follow up > > > > > > proceedures are lacking in their offices. NIDS protocol does not spread > > > > >itself > > > > > > > > > > > so thin. > > > > > > > > > > > > That said Dr Goldberg is a doctor who takes healing your child seriously, > > > > >very > > > > > > > > > > > prepared and is not afraid to speak his mind and offend. I have accepted this > > > > >as > > > > > > > > > > > part of the deal working with him (who wants a wishy washy doctor healing > > > > >your > > > > > > > > > > > child anyway). He is always prepared for our telephone consults, knows my > > > > > > daughter history, and kicks my butt when I was too scared to start the SSRI' > > > > > > > > > > saying I am here to try and heal your child lets not waste time (my > > > > >words...his > > > > > > > > > > > were stronger). > > > > > > > > > > > > I think for many passionate caring doctors who have had great success in > > > > >their > > > > > > > > > > > specific protocols they feel strongly they can take ALL our children to > > > > > > recovery. Having read many a post on many a site I now know this is not so. > > > > >Our > > > > > > > > > > > children are all so different and their issues so variable it indeed may take > > > > > > > > > > > one to many more protocols to get there. > > > > > > > > > > > > > > > > > > Suffice to say we as parents have to stay on our toes and know when to stay > > > > >and > > > > > > > > > > > when to move on (Cheryl's advice to me...thks)....the hard part is knowing > > > > >what > > > > > > > > > > > to do when we are not doctors, just parents with a powerful love in our > > > > >hearts > > > > > > > > > > > to heal our kids and see them flourish in this world. > > > > > > > > > > > > Lindy > > > > > > > > > > > > PS. We have been on the SSRI's for 9 days and the results have been nothing > > > > > > short of amazing for my daughter. We are holding our breaths as we saw > > > > >similar > > > > > > > > > > > results with HBOT which did not hold. Right now I am glad Dr G kicked my > > > > >butt. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 "And to be honest, most people in our society today do not care to know the truth because it might interfere with their convenient life style. It's gotten to the point where no one bats an eye at the mom who hands her kid a twinkie and a kool aid. But there's something wrong with you if you DON'T. Go figure."It is seriously tempting to want to put my head in the sand, let the kids "be kids" and drug them with ADHD meds. Life would certainly me simpler. --- ToniTo: mb12 valtrex Sent: Wed, August 18, 2010 12:51:21 AMSubject: Re: Re: Jackie::RE:Goldberg In order to address recovery, they would have to address vaccinations and the poisons they contain and the horrible reactions some children have to them. They would have to address the approach our entire culture has developed to health and wellness...rx, rx, rx. ($,$,$) And they would have to go after the food industry. So I don't see it happening. Most are not willing to throw away all that time, money and hard work they put into med school to be shunned by their peers when they go against the grain. It's like asking them to go against everything that's been drilled into their brains for 8+ years. It's asking them to give up the house on the hill and a membership at the country club. And to be honest, most people in our society today do not care to know the truth because it might interfere with their convenient life style. It's gotten to the point where no one bats an eye at the mom who hands her kid a twinkie and a kool aid. But there's something wrong with you if you DON'T. Go figure. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2010 Report Share Posted August 18, 2010 Jackie, I just checked and they were IGG. What does this mean? Thanks, Sandy > >> > > > > > > >> > > > > > Here is a question maybe someone has an answer to: > >> > > > > > > >> > > > > > Some have argued that HBOT is dangerous because while it increases > >>the flow > >> > >> > > > >of > >> > > > > > >> > > > > > oxygen to areas of the brain that need it, it also increases the flow > >>of > >> > >> > > > >oxygen > >> > > > > > >> > > > > > to areas that do NOT. > >> > > > > > > >> > > > > > SSRI's are used in this instance to increase bloodflow to certain > >>areas of > >> > >> > > > >the > >> > > > > > >> > > > > > brain. It is able to " weed out " exactly which areas to avoid? (unlike > >> > >> > > > > > hbot)????? > >> > > > > > > >> > > > > > Is that correct? > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > ________________________________ > >> > > > > > From: " boothlindy@ " <boothlindy@> > >> > > > > > To: mb12 valtrex > >> > > > > > Sent: Fri, August 13, 2010 2:16:17 PM > >> > > > > > Subject: RE:Goldberg > >> > > > > > > >> > > > > > > >> > > > > > I am a mother of a 5 year old daughter who has just started (3 months > >>in) the > >> > >> > > > > > >> > > > > > NIDS protocol with Dr Goldberg. We worked with 2 DAN doctors for 1.5 > >>years > >> > >> > > > >with > >> > > > > > >> > > > > > good results but hit a wall so to speak. > >> > > > > > > >> > > > > > > >> > > > > > When I wanted to try the virus protocol our DAN said OK gave us the > >>meds a > >> > >> > > > >piece > >> > > > > > >> > > > > > of paper with the info and said to us not much has been done in the > >>virus > >> > >> > > > >area > >> > > > > > >> > > > > > by the medical establishment and it does not work for most kids. > >>Something > >> > >> > > > >felt > >> > > > > > >> > > > > > wrong with her statement so I joined this site and was led to Dr > >>Goldberg by > >> > >> > > > >a > >> > > > > > >> > > > > > passionate mom (Marcia). > >> > > > > > > >> > > > > > That said when we first had our appt. I was somewhat taken aback by > >>his take > >> > >> > > > >on > >> > > > > > >> > > > > > DAN being the 'bad guys'. He went on about it for a little too long > >>for my > >> > >> > > > > > liking ... DAN was there for us when everybody else was saying go > >>home and > >> > >> > > > > > accept that is how your daughter is going to be. My 'bad guys' were > >>the > >> > >> > > > >standard > >> > > > > > >> > > > > > medical guys pushing the vaccines on my child with a severely and > >>visible > >> > >> > > > > > compromised immune system. I had to cut him short and say lets get > >>back to > >> > >> > > > >what > >> > > > > > >> > > > > > we came for, my fight is not with DAN but with healing my child. DAN > >>bashing > >> > >> > > > >as > >> > > > > > >> > > > > > I call it feels decidely uncomfortable for me, especially as they > >>recovering > >> > >> > > > >a > >> > > > > > >> > > > > > lot of of children, yes I do feel like because DAN are trying so many > >>bases > >> > >> > > > > > gut/metals/viral etc the doctors can throw a lot of things at us and > >>for > >> > >> > > > >those > >> > > > > > >> > > > > > of us struggling to study and grasp all the info out there we can > >>tend to > >> > >> > > > >rely > >> > > > > > >> > > > > > heavily on them for it all, hence over supplementing with the fear we > >>are > >> > >> > > > > > missing something or if we remove some they regress after all our > >>hard won > >> > >> > > > > > gains. I also think some of the DAN's are overloaded and good follow > >>up > >> > >> > > > > > proceedures are lacking in their offices. NIDS protocol does not > >>spread > >> > >> > > > >itself > >> > > > > > >> > > > > > so thin. > >> > > > > > > >> > > > > > That said Dr Goldberg is a doctor who takes healing your child > >>seriously, > >> > >> > > > >very > >> > > > > > >> > > > > > prepared and is not afraid to speak his mind and offend. I have > >>accepted this > >> > >> > > > >as > >> > > > > > >> > > > > > part of the deal working with him (who wants a wishy washy doctor > >>healing > >> > >> > > > >your > >> > > > > > >> > > > > > child anyway). He is always prepared for our telephone consults, > >>knows my > >> > >> > > > > > daughter history, and kicks my butt when I was too scared to start > >>the SSRI' > >> > >> > > > > >> > > > > > saying I am here to try and heal your child lets not waste time (my > > >> > > > >words...his > >> > > > > > >> > > > > > were stronger). > >> > > > > > > >> > > > > > I think for many passionate caring doctors who have had great success > >>in > >> > >> > > > >their > >> > > > > > >> > > > > > specific protocols they feel strongly they can take ALL our children > >>to > >> > >> > > > > > recovery. Having read many a post on many a site I now know this is > >>not so. > >> > >> > > > >Our > >> > > > > > >> > > > > > children are all so different and their issues so variable it indeed > >>may take > >> > >> > > > > > >> > > > > > one to many more protocols to get there. > >> > > > > > > >> > > > > > > >> > > > > > Suffice to say we as parents have to stay on our toes and know when > >>to stay > >> > >> > > > >and > >> > > > > > >> > > > > > when to move on (Cheryl's advice to me...thks)....the hard part is > >>knowing > >> > >> > > > >what > >> > > > > > >> > > > > > to do when we are not doctors, just parents with a powerful love in > >>our > >> > >> > > > >hearts > >> > > > > > >> > > > > > to heal our kids and see them flourish in this world. > >> > > > > > > >> > > > > > Lindy > >> > > > > > > >> > > > > > PS. We have been on the SSRI's for 9 days and the results have been > >>nothing > >> > >> > > > > > short of amazing for my daughter. We are holding our breaths as we > >>saw > >> > >> > > > >similar > >> > > > > > >> > > > > > results with HBOT which did not hold. Right now I am glad Dr G kicked > >>my > >> > >> > > > >butt. > >> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2010 Report Share Posted August 19, 2010 LOL - reminds me of our first follow-up (and last) with the dev. ped. who diagnosed our son. Yep, he still has autism, that will be $240 please. Subject: Re: Re: Jackie::RE:GoldbergTo: mb12 valtrex Date: Wednesday, August 18, 2010, 4:56 AM Our allergist was a joke, too. "Nope. Nothing's there. Everything looks fine. Come back if you have any problems" okayyyyy buddy, we have a problem NOW - that's why we're here. If you can't be bothered to take more than 30 seconds to figure out THIS problem, why would I ever come back to you for ANOTHER problem????????? It makes me crazy. To: mb12 valtrex Sent: Wed, August 18, 2010 12:51:21 AMSubject: Re: Re: Jackie::RE:Goldberg In order to address recovery, they would have to address vaccinations and the poisons they contain and the horrible reactions some children have to them. They would have to address the approach our entire culture has developed to health and wellness...rx, rx, rx. ($,$,$) And they would have to go after the food industry. So I don't see it happening. Most are not willing to throw away all that time, money and hard work they put into med school to be shunned by their peers when they go against the grain. It's like asking them to go against everything that's been drilled into their brains for 8+ years. It's asking them to give up the house on the hill and a membership at the country club. And to be honest, most people in our society today do not care to know the truth because it might interfere with their convenient life style. It's gotten to the point where no one bats an eye at the mom who hands her kid a twinkie and a kool aid. But there's something wrong with you if you DON'T. Go figure. To: mb12 valtrex Sent: Wed, August 18, 2010 12:31:36 AMSubject: Re: Jackie::RE:Goldberg What? We have used allergists, what a joke! The teaching hospital near me is suppose to be on the top 10 list in the U.S., and their autism department told me that they have no idea about recovery. They just diagnose. What we do to recover our kids is use doctors that others tell us recovered their kids. We go by results, not titles, not prestige.Love and prayers,Heidi NFind a good allergists and check out all of his food andenvironmental allergies. Then look into a good teaching hospital and ask aleading immunologist to investigate his immune system. The NIDS site can helpyou argue your case.lastly pray the finger the route cause of the immune disorder. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2010 Report Share Posted August 19, 2010 Hi, I have belonged to this board for almost a year now... I have read so much my head is spinning! Based on what I have read I think I need to bring my children to see a really great allergist and a really great immunologist. Both of my children have GI disorders, along with GERD, eczema, asthma, colitis, leaky gut, low grade fevers, dozens of allergies and sensitivities. My son was hospitalized over the summer because his chronic ear infections turned into mastoiditis so he needed to have his tonsils and adnoids removed as well as having the infection vacuumed out of his ears and tubes inserted. I live in the Boston, MA area... can anyone suggest a great allergist and immunologist? We've been to several allergists in the past and have had miserable experiences. Thank you for any help you may be able to provide us, - Jeanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2010 Report Share Posted August 19, 2010 I'm in the Boston area as well, however, I'm away from home right now and don't have access to my book with my list of providers. I am a moderator on the Commonbonds list, do you know this list - it's a yahoo group for parents in MA with ASD kids Commonbonds . If you post this question on that list I think you should get some good responses. My other suggestion would be to ask for a MA Rescue Angel (am one as well) these moms really know bio med and since they are local they tend to know who people are having good experiences with. You will see the names Chapman and also Dana Read - these moms are brilliant. If this is info you already have, perhaps you are a Rescue Angel, sorry to be redundant. Best of luck, Alison MacNeil Re: Jackie::RE:Goldberg Hi, I have belonged to this board for almost a year now... I have read so much my head is spinning! Based on what I have read I think I need to bring my children to see a really great allergist and a really great immunologist. Both of my children have GI disorders, along with GERD, eczema, asthma, colitis, leaky gut, low grade fevers, dozens of allergies and sensitivities. My son was hospitalized over the summer because his chronic ear infections turned into mastoiditis so he needed to have his tonsils and adnoids removed as well as having the infection vacuumed out of his ears and tubes inserted. I live in the Boston, MA area... can anyone suggest a great allergist and immunologist? We've been to several allergists in the past and have had miserable experiences. Thank you for any help you may be able to provide us,- Jeanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2010 Report Share Posted August 19, 2010 JeaneIf you saw my post let me give you some back round on the immunology connection. My sister Dr Klimas is the one that set us on our path. She is a leading r searcher in Chronic Fatigue and Gulf war syndrom and believes they are sister illnesses with Autism. Unfortunately she dose no and will not see children becaus On that note when I started working with the SIA group she flat told me I would drive parents nuts but From: "morrealejm@..." To: mb12 valtrex Sent: Thu, August 19, 2010 9:26:25 PMSubject: Re: Jackie::RE:Goldberg Hi, I have belonged to this board for almost a year now... I have read so much my head is spinning! Based on what I have read I think I need to bring my children to see a really great allergist and a really great immunologist. Both of my children have GI disorders, along with GERD, eczema, asthma, colitis, leaky gut, low grade fevers, dozens of allergies and sensitivities. My son was hospitalized over the summer because his chronic ear infections turned into mastoiditis so he needed to have his tonsils and adnoids removed as well as having the infection vacuumed out of his ears and tubes inserted. I live in the Boston, MA area... can anyone suggest a great allergist and immunologist? We've been to several allergists in the past and have had miserable experiences. Thank you for any help you may be able to provide us, - Jeanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2010 Report Share Posted August 19, 2010 Check out Northampton Wellness Center. My sister takes her son there and we have an appt. for my son in November.-TammyTo: mb12 valtrex Sent: Thu, August 19, 2010 9:26:25 PMSubject: Re: Jackie::RE:Goldberg Hi, I have belonged to this board for almost a year now... I have read so much my head is spinning! Based on what I have read I think I need to bring my children to see a really great allergist and a really great immunologist. Both of my children have GI disorders, along with GERD, eczema, asthma, colitis, leaky gut, low grade fevers, dozens of allergies and sensitivities. My son was hospitalized over the summer because his chronic ear infections turned into mastoiditis so he needed to have his tonsils and adnoids removed as well as having the infection vacuumed out of his ears and tubes inserted. I live in the Boston, MA area... can anyone suggest a great allergist and immunologist? We've been to several allergists in the past and have had miserable experiences. Thank you for any help you may be able to provide us, - Jeanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2010 Report Share Posted August 19, 2010 Bill: One time I saw a post of a guy who interviewed those with Gulf War. He was an investigative reporter. He said he interviewed many with Gulf War Syndrome, and that every one of them had a child with autism. Yes, there is a connection, but I think it's more encompassing than just Gulf War. Gulf War Syndrome is often blamed on mycoplasma fermentens. Is that what your sister is finding as well? Love and prayers, Heidi N My sister Dr Klimas is the one that set us on our path. She is a leading r searcher in Chronic Fatigue and Gulf war syndrom and believes they are sister illnesses with Autism. Quote Link to comment Share on other sites More sharing options...
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