Pudgeo Posted June 4, 2008 Report Share Posted June 4, 2008 Hello, I 've been doing alot of research about this..My son has PANDAS and we are getting IVIG next Sun (woohoo) He is bascially a wreck..tons of OCD/agitation/ spaciness....I was studying Andrew Cutlers book about Chelation and mercury poisoning.. and there is a huge correlation between auto-immune and metals..so now I am feeling like we need to chelate my son in order for the IVIG to work! He did have a porpyrins test that came back HIGH in metals esp mercury.. I'd love to get some more ideas/comments about this...Sarah Link to comment Share on other sites More sharing options...
michele Posted June 4, 2008 Report Share Posted June 4, 2008 Dr. Demio DAN Dr. believes the same. My son had the high metals also. He wanted him to rid of toxins before hand by taking nystatin and build him up with amino acids and some other supplements. He was headed in that direction next. I myself don't know much about chelation. It had me scared. I have someliterature on itif you'd like me to send you some info. Have you done it before? I did not go through with it for him. I do have to say the Nystatin helped detox alot. Can you get some of that? Mustang Carol may know more on this. Maybe someone here has tried it for their child. I am definately excited about your IVIG process. You have to report the resultshere. Where are you having it done and by which Dr.? Have you tried IVIG before? All the best. Keep me posted. Michele Hello, I 've been doing alot of research about this..My son has PANDAS and we are getting IVIG next Sun (woohoo)He is bascially a wreck..tons of OCD/agitation/ spaciness....I was studying Andrew Cutlers book about Chelation and mercury poisoning.. and there is a huge correlation between auto-immune and metals..so now I am feeling like we need to chelate my son in order for the IVIG to work! He did have a porpyrins test that came back HIGH in metals esp mercury.. I'd love to get some more ideas/comments about this...Sarah Link to comment Share on other sites More sharing options...
Pudgeo Posted June 4, 2008 Author Report Share Posted June 4, 2008 Right now I view chelation as a MUST, I don't think my son will get better without it. WE started supplements 2 months ago and my son is worse! My son was not considered autistic or on the spectrum before this..After his 3 day illness he totally changed and it's gotten so he can barely function right now! So something is really out of whack in his system. I do not want to waste 4 rounds of IVIG with out chelation along with it. I feel it is very safe...look into Andy Cutler protocal, it's an excellent book Sarah I am very lucky as Kaiser my HMO agreed to do IVIG and pay for it too...We are doing it Sunday at Kaiser Hospital in WalnutCreek CA Link to comment Share on other sites More sharing options...
P_Mom Posted June 4, 2008 Report Share Posted June 4, 2008 Sarah, Hi.......I read about your son getting IVIG on Sunday... I will keep you in my prayers for all to go well and to have great results. IVIG is something we are considering for our PANDAS son, so, could you please let us know how it goes?! I also read you will be doing four rounds...how far apart will these be spaced? Will you chleate first? Do you have enough time for that before IVIG? Sorry so many questions but I am very interested in this process you will be taking. Stay in touch! Kelly Link to comment Share on other sites More sharing options...
michele Posted June 4, 2008 Report Share Posted June 4, 2008 I've been there too. My son was worse at first on the supplements. I don't know if they boosted his immune system but the tics and behaviors got worse. I was scared and frustrated and wanted answers right then. It is a hard road for these PANDAS kids and their parents. I pray for your family that the IVIG goes well. What type of Dr. will do it? Has he done it before to treat PANDAS? If he recommends chelation then go for it. Can he do it too? What are his symptoms right now? I will get the book you mentioned from the library. What a blessing that your insurance will cover this treatment. You are very fortunate. What is your sons name so I can pray for him? Please keep me posted. Michele Right now I view chelation as a MUST, I don't think my son will get better without it. WE started supplements 2 months ago and my son is worse!My son was not considered autistic or on the spectrum before this..After his 3 day illness he totally changed and it's gotten so he can barely function right now! So something is really out of whack in his system. I do not want to waste 4 rounds of IVIG with out chelation along with it. I feel it is very safe...look into Andy Cutler protocal, it's an excellent book Sarah I am very lucky as Kaiser my HMO agreed to do IVIG and pay for it too...We are doing it Sunday at Kaiser Hospital in WalnutCreek CA Link to comment Share on other sites More sharing options...
Pudgeo Posted June 5, 2008 Author Report Share Posted June 5, 2008 Hello, Thanks for the kind thoughts.. the plan is to do IVIG every 28 days/ Dr Gupta said only do 4-5 rounds. So I said what if it doesn't work? what do we do?? My Kaiser Pedi ordered the IVIG to the WC hospital and the Pedi at the Hosp will administer. I doubt you can get the Andy Cutler book from the library..It's called Amalgam Illness . diagnonis & treatment. I was going through the book noting everything you can be low in that is related to immune dysfunction and my son is low in all the stuff Cutler says..like amino acids, zinc, selenium, folic acid.. I backed off on some supplements, transfer factor/coq10/DMG and I see a slight improvement in my son... He's just a mess, barely functioning... My DAN! agreed we need to chelate him ASAP to help IVIG work.. Sarah Link to comment Share on other sites More sharing options...
patty Posted June 5, 2008 Report Share Posted June 5, 2008 Good luck Sarah. Pat Link to comment Share on other sites More sharing options...
michele Posted June 5, 2008 Report Share Posted June 5, 2008 Is he autistic? How exactly will the IVIG work? What is it supposed to do? I am sorry to hear he is doing so poorly. Did he have immunizations recently that may have left heavy metals in his body? Will he freak out to the needles? How old is he? Blessings. Michele Hello, Thanks for the kind thoughts..the plan is to do IVIG every 28 days/ Dr Gupta said only do 4-5 rounds. So I said what if it doesn't work? what do we do?? My Kaiser Pedi ordered the IVIG to the WC hospital and the Pedi at the Hosp will administer. I doubt you can get the Andy Cutler book from the library..It's called Amalgam Illness . diagnonis & treatment. I was going through the book noting everything you can be low in that is related to immune dysfunction and my son is low in all the stuff Cutler says..like amino acids, zinc, selenium, folic acid.. I backed off on some supplements, transfer factor/coq10/DMG and I see a slight improvement in my son... He's just a mess, barely functioning... My DAN! agreed we need to chelate him ASAP to help IVIG work.. Sarah Link to comment Share on other sites More sharing options...
michele Posted June 5, 2008 Report Share Posted June 5, 2008 Is it Sanjay Gupta from CNN? Does Dr.Gupta have experience with PANDAS? Michele Hello, Thanks for the kind thoughts..the plan is to do IVIG every 28 days/ Dr Gupta said only do 4-5 rounds. So I said what if it doesn't work? what do we do?? My Kaiser Pedi ordered the IVIG to the WC hospital and the Pedi at the Hosp will administer. I doubt you can get the Andy Cutler book from the library..It's called Amalgam Illness . diagnonis & treatment. I was going through the book noting everything you can be low in that is related to immune dysfunction and my son is low in all the stuff Cutler says..like amino acids, zinc, selenium, folic acid.. I backed off on some supplements, transfer factor/coq10/DMG and I see a slight improvement in my son... He's just a mess, barely functioning... My DAN! agreed we need to chelate him ASAP to help IVIG work.. Sarah Link to comment Share on other sites More sharing options...
Pudgeo Posted June 5, 2008 Author Report Share Posted June 5, 2008 No he is not from CNN..He is a researcher at Univ of Irvine Dr Sudhir Gupta..Dr Gupta has alot of experience treating PANDAS with IVIG My was not autistic or ever given that kind of diagnosis..before the illness he had he was very outgoing, social..he totally changed after a 3-day fever and he's slowly gotten worse. I cannot think of what could have triggered this..my DAN! tried to come up with a possible trigger too... He had not had any shots etc for a long time.. He will be fine with the IVIG..In fact he will like being able to watch dvd's for 5 hours laying in the hospital! He thinks the hospital is like a hotel! (a little more expensive huh) The IVIG is human immuglobin that should go in and take his immuglobin and retrain it to stop attacking good cells!! Dr Gupta said to expect at least 4-5 rounds.....such a long wait!! Sarah Link to comment Share on other sites More sharing options...
Andy Posted June 6, 2008 Report Share Posted June 6, 2008 I believe my oldest son had around three years of chelation treatments. We did just about all of them if you have any questions, I would be glad to answer them to the best of my memory. The IVIG is human immuglobin -as for this, we did not do it. As you know it is very expensive and my understanding of it is that it is meant to try to kill an infection in the brain that may have come from the Measles vaccaniation which used live virsus. Link to comment Share on other sites More sharing options...
Pudgeo Posted June 8, 2008 Author Report Share Posted June 8, 2008 Hello, From my research of IVIG it is human immuglobin that is donated..hopefully the new immuglobin will go in and retrain the old immuglobin to stop attacking the "good cells". THe old immuglobin should start to follow the new immuglobin in the body...Sarah P.S. I am trying to figure old the most effective way to do chelation Link to comment Share on other sites More sharing options...
FallingApart Posted February 27, 2010 Report Share Posted February 27, 2010 Hello, I know this is a very old post, but I'm wondering if this is something that people are doing and if so what the results are? I've come across this in the reading I have been doing recently and am very curious about it. We did have a concern about heavy metals and our DD and had her tested for a variety of them at the end of the summer. DOes anyone know if it's possible to test normal on the blood test but still have high levels of heavy metals in your body? Thanks so much! Link to comment Share on other sites More sharing options...
Chemar Posted February 27, 2010 Report Share Posted February 27, 2010 thanks for finding this old thread on the TS forum I have moved it over to PANDAS forum with a link left on TS so you can hopefully get most input to your question Link to comment Share on other sites More sharing options...
coco Posted February 27, 2010 Report Share Posted February 27, 2010 Hello, I know this is a very old post, but I'm wondering if this is something that people are doing and if so what the results are? I've come across this in the reading I have been doing recently and am very curious about it. We did have a concern about heavy metals and our DD and had her tested for a variety of them at the end of the summer. DOes anyone know if it's possible to test normal on the blood test but still have high levels of heavy metals in your body? Thanks so much! I do know that mercury will not show an accurate read on blood work. You can help measure the amount of neural mercury in the body by using a challenge test by taking a chelator challenge pill, collect urine and then measure the level of excreted mercury and chelator to get an idea on how much is sitting the cells. But I don't believe you ever know for certain until you start pulling over time, testing, pull more, test again, etc. until clean. Lead and arsenic will show accurately on blood work. Pulling mercury out of the blood and soft tissues is relatively easy. Pulling it out of the insides of your brain cells is not so easy. It is here than the mercury can effect the ability of the nerve cells to communicate, for example, by clogging the noradrenaline alpha-1 receptors. Very tricky. Link to comment Share on other sites More sharing options...
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