Guest guest Posted July 24, 2000 Report Share Posted July 24, 2000 << Does anyone know if thimerasol is used to preserve the med giving with IVIG treatment? >> I know it used to be and wouldn't be surprised if it still is for some of it. There is a medline indexed paper about people getting mercury (thimerosal) poisoning from IVIG. Andy Cutler Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2000 Report Share Posted July 24, 2000 The IVIG that my son recieves is gammamun n and is 100% preservative free.This is the only type our dr. uses. The saline we use is also sugar free as some react to sugar. Kathi Mom to Colten 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2000 Report Share Posted July 24, 2000 In a message dated 07/24/2000 3:14:37 PM Eastern Daylight Time, AndyCutler@... writes: << << Does anyone know if thimerasol is used to preserve the med giving with IVIG treatment? >> I know it used to be and wouldn't be surprised if it still is for some of it. There is a medline indexed paper about people getting mercury (thimerosal) poisoning from IVIG. Andy Cutler >> OK... another one bites the dust! And another one down............. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2000 Report Share Posted July 24, 2000 What is the deal with all intravenous bags? Leach out of plastics too I have heard? KAthy [ ] IVIG >Hi all, > >Does anyone know if thimerasol is used to preserve the med giving with IVIG >treatment? I have a friend whose child has received two doses of this and is >now showing higher mercury levels in hair analysis than he did a year ago. >He also had a sort of regression after the second dose which is a bummer >since he made some good progress with the first dose. We're trying to narrow >down where this new mercury came from given his regression. >Gaylen > >------------------------------------------------------------------------ >Never lose a file again. Protect yourself from accidental deletes, >overwrites, and viruses with @Backup. >Try @Backup it's easy, it's safe, and it's FREE! >Click here to receive 300 MyPoints just for trying @Backup. >1/6349/9/_/705339/_/964465453/ >------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 Gaylen, I have the package insert for the IVIG distributed by Novartis, made by the Swiss Red Cross. There is no list of ingredients on here, (must be on the container or box) but it says there are no preservatives. It is delivered to the doc as a powder and is reconstituted with sterile water alone, or water with either a little Nacl or a little dextrose. Chris On Mon, 24 Jul 2000 15:04:10 EDT Nomoremetals@... writes: > Hi all, > > Does anyone know if thimerasol is used to preserve the med giving > with IVIG > treatment? I have a friend whose child has received two doses of > this and is > now showing higher mercury levels in hair analysis than he did a > year ago. > He also had a sort of regression after the second dose which is a > bummer > since he made some good progress with the first dose. We're trying > to narrow > down where this new mercury came from given his regression. > Gaylen > > ------------------------------------------------------------------------ > Never lose a file again. Protect yourself from accidental deletes, > overwrites, and viruses with @Backup. > Try @Backup it's easy, it's safe, and it's FREE! > Click here to receive 300 MyPoints just for trying @Backup. > 1/6349/9/_/705339/_/964465453/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 In a message dated 7/24/00 2:05:55 PM Central Daylight Time, Nomoremetals@... writes: << Does anyone know if thimerasol is used to preserve the med giving with IVIG treatment? >> No, IV IG never had thimerosal. The intramuscular (IM) forms all did and mostly still do. (Rhogam is one example of IM IG; it is also made against chicken pox and a few other things.) The paper about getting thimerosal poisoned with IG products was a man who was given massive doses of IM IG against Hepatitis B and when that didn't work, the genius surgeons gave the IM form IV !! How to really guarantee that the mercury went straight to the brain... Jane El-Dahr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 In a message dated 7/24/00 11:46:22 PM Central Daylight Time, sbernard@... writes: << Why would the IM form have it but not the IV form? >> Sallie, My best guess is that when IVIG was licensed in the US in late 1980 or early 1981, everyone realized that large volumes would be given to patients and that it would be a sterile single-use product so that thimerosal would not be necessary (or safe). The IM product had been around for decades, came in multi-use vials for some products, and was essentially considered a vaccine so, like the other vaccines, thimerosal was included. Personally, I think that this also goes back to the fact that it was infectious disease docs who created the IM products/vaccines and immunologists who created IVIG... glad that I am in the group who at least sometimes uses their brains! Also as immunologists we admit over and over that we don't know everything while I have yet to hear a humble infectious disease doc - they are too busy stamping out everything and not looking to see who or what else are under their big feet. Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 Depends on the brand and type of IVIG. I am looking for the hyperlink to the site I know details this. Heidi [ ] IVIG > Hi all, > > Does anyone know if thimerasol is used to preserve the med giving with IVIG > treatment? I have a friend whose child has received two doses of this and is > now showing higher mercury levels in hair analysis than he did a year ago. > He also had a sort of regression after the second dose which is a bummer > since he made some good progress with the first dose. We're trying to narrow > down where this new mercury came from given his regression. > Gaylen > > ------------------------------------------------------------------------ > Never lose a file again. Protect yourself from accidental deletes, > overwrites, and viruses with @Backup. > Try @Backup it's easy, it's safe, and it's FREE! > Click here to receive 300 MyPoints just for trying @Backup. > 1/6349/9/_/705339/_/964465453/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 I'm not sure if IVIG still contains mercury, but last night I went to the med library and read this article. It was in the Journal of Pediatrics--I'm sure many pediatricians read it. After reading this how could they think that having ethyl mercury in baby shots is OK? J Pediatr 1980 Jul;97(1):153-5 Mercury toxicity (acrodynia) induced by long-term injection of gammaglobulin. Matheson DS, son TW, Gelfand EW The article was written in 1980, but the first sentence states, " Most commercially available gamma globulin preparations contain merthiolate (sodium ethylmercuri- thiosulfate), a mercury containing compound, which serves as a bacteriostatic agent. Thus, patients receiving regular injections of gamma globulin are potentially at risk for the development of mercury toxicity. " It goes on to state, " The signs and symptoms of mercury toxicity are varied and depend on the form of mercury compound, the length of time of exposure and individual patient sensitivity. " The rest of the article presents a case study of a 20 year old with congenital agammaglobulinemia who had gotten injections of gamma globulin and developed acrodynia. fullarmor@... wrote: > In a message dated 07/24/2000 3:14:37 PM Eastern Daylight Time, > AndyCutler@... writes: > > << << Does anyone know if thimerasol is used to preserve the med giving with > IVIG > treatment? >> > > I know it used to be and wouldn't be surprised if it still is for some of it. > > There is a medline indexed paper about people getting mercury (thimerosal) > poisoning from IVIG. > > Andy Cutler >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 Jane - Why would the IM form have it but not the IV form? - SB seldahr@... wrote: > In a message dated 7/24/00 2:05:55 PM Central Daylight Time, > Nomoremetals@... writes: > > << > Does anyone know if thimerasol is used to preserve the med giving with IVIG > treatment? >> > > No, IV IG never had thimerosal. The intramuscular (IM) forms all did and > mostly still do. (Rhogam is one example of IM IG; it is also made against > chicken pox and a few other things.) The paper about getting thimerosal > poisoned with IG products was a man who was given massive doses of IM IG > against Hepatitis B and when that didn't work, the genius surgeons gave the > IM form IV !! How to really guarantee that the mercury went straight to the > brain... > > Jane El-Dahr > > ------------------------------------------------------------------------ > Missing old school friends? Find them here: > 1/7079/9/_/705339/_/964499719/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 LOL,the last ID doc I talked to was over a business lunch and he was more impressed with all the money he was making on his IV homecare for his AIDS patients . He kept telling me things like..., " I just can't make ends meet on this little money " referring to his paltry $6 Million a year, " I need to make some REAL money ! " It was hard to keep the lunch down that day. Jeannie > In a message dated 7/24/00 11:46:22 PM Central Daylight Time, > sbernard@n... writes: > > << > Why would the IM form have it but not the IV form? > >> > > Sallie, > > My best guess is that when IVIG was licensed in the US in late 1980 or early > 1981, everyone realized that large volumes would be given to patients and > that it would be a sterile single-use product so that thimerosal would not be > necessary (or safe). The IM product had been around for decades, came in > multi-use vials for some products, and was essentially considered a vaccine > so, like the other vaccines, thimerosal was included. > > Personally, I think that this also goes back to the fact that it was > infectious disease docs who created the IM products/vaccines and > immunologists who created IVIG... glad that I am in the group who at least > sometimes uses their brains! Also as immunologists we admit over and over > that we don't know everything while I have yet to hear a humble infectious > disease doc - they are too busy stamping out everything and not looking to > see who or what else are under their big feet. > > Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 but there is preservative free IVIG. Just like everything else you get you need to ask about whats in it before hand. Kathi Mom to Colten 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 << but there is preservative free IVIG. Just like everything else you get you need to ask about whats in it before hand. >> Don't just ask, the doc's lie. They are actually trained to do this. You need to read the vial and actually observe that it is drawn up into the syringe or put in the bag from that specific vial. You need to do this every time, no matter how nasty the doc and nurse get. This btw is one of your fundamental patients' rights they do have to let you do. Why do I say this? I know of 2 women with mercury induced MS. In remission unless they are exposed. They had to give up on getting flu shots because no matter how much they would make the doc swear on a stack of bibles that he'd make SURE it had no thimerosal, and that indeed what was in the syringe had no thimerosal, it usually did and they would have a relapse after the shot. Then they'd go read the riot act at his office, read the vial, and find out it had thimerosal. After going through this several times with several differ ent doctors they got the message - you cannot trust these people to tell the truth about what they are giving you - they are actually trained to not do that. I do not yet know where the training occurs or if it is uniform or only happens at certain instititutions. The comments of physicians on list would be well appreciated. Andy Cutler Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 Andy how about any other IvIG treatments or bags, that are under iv? My son who has seizures often has to take a boulus dosage of dilantin in the ER, do these contain mercury? Kathy Re: [ ] IVIG ><< but there is preservative free IVIG. Just like everything else you get you >need to ask about whats in it before hand. >> > >Don't just ask, the doc's lie. They are actually trained to do this. You >need to read the vial and actually observe that it is drawn up into the >syringe or put in the bag from that specific vial. You need to do this every >time, no matter how nasty the doc and nurse get. This btw is one of your >fundamental patients' rights they do have to let you do. > >Why do I say this? I know of 2 women with mercury induced MS. In remission >unless they are exposed. They had to give up on getting flu shots because no >matter how much they would make the doc swear on a stack of bibles that he'd >make SURE it had no thimerosal, and that indeed what was in the syringe had >no thimerosal, it usually did and they would have a relapse after the shot. >Then they'd go read the riot act at his office, read the vial, and find out >it had thimerosal. After going through this several times with several differ >ent doctors they got the message - you cannot trust these people to tell the >truth about what they are giving you - they are actually trained to not do >that. > >I do not yet know where the training occurs or if it is uniform or only >happens at certain instititutions. The comments of physicians on list would >be well appreciated. > >Andy Cutler > >------------------------------------------------------------------------ >Free, Unlimited Calls Anywhere! >Visit Firetalk.com - click below. >1/5479/9/_/705339/_/964548474/ >------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 Jeffery My son who has seizures who often lands up in ER get's boulus doses of phenotin (sp?) dilantin, in a IV bag, do any kinds of medicines such as this contain mercury as the preservative? Kathy [ ] IVIG >Just a general piece of information: IVIG manufactured by Bayer >(Gamimune 10%) currently has NO preservative. It is strictly protein >(mainly immunoglobulin- IgG) in glycine solution. > >J. Segal, MD > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2000 Report Share Posted September 11, 2000 << Date: Fri, 8 Sep 2000 00:49:36 EDT From: KKSOKOLSKI@... Subject: Re: toxicity reference limits I first learned about it from Goldenberg, the only parent in this area at the time who had a child who was completely cured of autism. Her son had receivied IVIG from Dr. Gupta. Since that time I have known several children who have been greatly improved after IVIG. I know of only four doctors who prescribe it for autistic children, although there are probably more: Dr. Bradstreet in Florida, Dr. El-Dahr in Louisiana, another doctor in land, and Dr. Gupta. The first two physicians have treated their own autistic children with IVIG with great success. I think there is a lot of hope in the treatment but recent studies suggest it has to be given in a higher dosage than first thought. It used to be given at 400 mg/Kg. I think it has been learned that it has to be given in a dosage of at least 800 mg/Kg and some go as high as 2 grams/Kg. It is very expensive. One treatment could cost several thousand dollars so it is important to obtain insurance coverage. This may require a letter from an expert like Dr. Gupta. We are scheduled to begin infusions in mid-October. Let me know if I can be of any further help. Ken Sokolski>> To set the record straight, I have not used IVIG for my child. As an immunologist and rheumatologist, I deal with both children with immune deficiencies and children with autoimmune diseases. Based on Dr. Gupta's use of low dose IVIG (400 mg/kg, used to replace low IgG in children with immune deficiencies) with improvement in language in some children with autism, I suggested that high dose IVIG, used for autoimmune disorders at 1-2 gm/kg, might work better since autistic children have brain auto-antibodies. However, my concern was always that unless we got to the bottom of why these children had the brain auto-antibodies to begin with, high dose IVIG would be only temporarily effective and not a long term solution. Once I began reading about mercury and autoimmunity, especially about brain autoantibodies in workers exposed to mercury, things started to make sense. Currently I am not starting any child on IVIG until after dealing with mercury. Ken's son is actually the first I know about who will have done this. Jeff Bradstreet has been using 1 - 1.5 gm/kg every 4-6 weeks; it probably won't take as much as 2 gm/kg to work. The big problem is that it is very expensive so I have only treated children whose insurance will cover it. All of this will be covered at the DAN conference, so please excuse my not responding to any further questions until I am back from that. Still polishing up a few things... Jane El-Dahr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2005 Report Share Posted January 28, 2005 My husband had IVIG. His doctor was King Engel at USC MDA. The IVIG definitely was not for CMT. While Dr. Engel knew Jim probably had CMT, he said there was no treatment for CMT, so he would try to treat him on the theory it was an immune problem. Several treatments were tried. The beta interferon would make him feel very sick for several hours; he says he literally wanted to die. The IVIG was the worst because he had two anaphylactic shocks about his fourth or fifth treatment. I was there for the frightening first shock; the second one was while he was at the ER. None of the immune problem treatments worked. Elinor Hood Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2005 Report Share Posted February 2, 2005 Well, my husband had his first IVIG treatment yesterday. He had no problems with it. I still have a ton of questions to ask the doctor when he goes back. If he does indeed have CMT, the main thing is why did he decide to do the IVIG thing? What type of CMT does my husband have? There is so much to read and research in this club. Thank you for being here. Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2008 Report Share Posted April 28, 2008 Hi IVIG is a major immune modulator, but I don't know what directions, etc. Also, I wonder if - when giving IVIG - if it modulates it down and THEN underlying infections (especially viral) could take advantage of that. Dr G doesn't start kids on IMGG (intra-muscular) until an average of a year into the protocol and only after other long-term infection treatment has been addressed. I've been recommended IVIG by my rheumatologist - not offered it, just stated that it's being used in PANDAS. But I am not inclined to take it without being on antivirals because I also have CFIDS and a history of EBV encephalitis when I was a kid. I know I'm also viral in addition to the chronic strep/chronic mycoplasma. So - I'd take IMGG, but even then, I believe I should be on antivirals for quite a few months first. And that in itself could possibly help my ASO titer to come down - indirectly of course, hopefully by helping my Natural Killer cells to come up (from 2%) - which is needed to down-regulate the antibody production. IVIG could do that manually, but I don't think it would be right for me. The antivirals, antifungals, low allergy diet, and in some cases extended antibiotic treatment, probiotics (limited strains) are all supposed to not only address underlying chronic infections, but support the immune system to give it the opportunity to cool it's own self down if it is able to. It takes a minimum of a year for this to begin, and another year for the rest of the gains to really start. There isn't a quick fix, but this is the best thing going that I've found, and it's not just " forcing " things. Dr G had planned on using IMGG on my youngest after a couple of years and his labs still not looking as great as they should - he's my CFIDS kid, not the ASD one. My oldest never needed it. #2 ended up not getting them (my local pediatrician was very hateful about it) because I couldn't get local help and just wasn't able to doctor-hunt at the time, and he seemed to perk up without it after all. But looking back I really wish we had gone that step, because he regresses back into fatigue and poor eye contact a good bit now that he's off meds, whereas the other child who's labs did normalize etc has continued to do well. HTH- --- angie huiz <angiehuiz@...> wrote: > We are currently waiting to get in for our first > appointment, but have done the DAN protocol in > the past, which included IVIG for my son. So far, > it appears that my son has a hyperactive immune > system. We did one round of IVIG at the regular > dose and his stims and OCD talk really increased > starting after it (already high, but have since > returned to baseline). Because of this, we were > recommended not to continue, and I did not feel > comfortable with any further treatments either. > > The treatments are also VERY expensive, even > though our state disability paid for the med itself > only. The run time was 6 hours of nursing > monitoring. My intuition was that it was not the > right thing for my son. The protocol seems to > make more sense to me and seems to treat longer > term. There seems to be some contoversy also on the > effectiveness of IVIG, although I did know some kids > that did respond well to it also. Some of the > information on it states that the gains are not > necessarily long term. I do not know the validity > of this. > > This was an IV treatment, which is different than > the treatments with injections. Maybe others can > speak to the injections for this that can be used > within . This was just our personal experience, > but hope it helps. > > Angie > > > --------------------------------- > Be a better friend, newshound, and know-it-all with > Mobile. Try it now. > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2009 Report Share Posted July 1, 2009 Has anyone found a NE OHIO Dr. to treat immune issues with IVIG? I know research is showing this helpes alot but we seem behind in research in OH. Anyone have a good immune Dr. they use with the Autism? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2009 Report Share Posted July 3, 2009 I heard good things about this doctor, from a friend: W. Hostoffer, D.O. Dr. Hostoffer graduated from Carroll University and received his D.O. in 1985 at the Philadelphia College of Osteopathic medicine. He completed his residency training at Doctors hospital in Columbus, Ohio. His fellowship training was completed at the University of Alabama. He was the Clinical Director of pediatric and adult Immunology at Case Western Reserve University. Dr. Hostoffer is board certified in Allergy and Immunology and is currently a Clinical Assistant Professor in Pediatrics at Case Western Reserve. He is in South Euclid Ohio Go here for more info: www.allergycleveland.com We are going to see him on the 13th of July...cant wait. Not sure if our case would be an IVIG case but neurologist, DAN doc, all seem to think we are good candidates...wanted an immunulogist to assist us further.... > > Has anyone found a NE OHIO Dr. to treat immune issues with IVIG? I know research is showing this helpes alot but we seem behind in research in OH. Anyone have a good immune Dr. they use with the Autism? > Quote Link to comment Share on other sites More sharing options...
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