Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 Hi Jen, I started out with about 2 & 1/2 grams & slowly went up to 5 & then 15 & then stayed at 20 for quite a while. I had to try different brands of Gam to see which I tolerated best. I think because of my sensitivities the base made a difference. I seem to do best on the Glycine base of Bayer's brands. It took about 3 months to find the right brand & dosage & drip speed. I was very sick at first & had a lot of migraines. I think mostly because of the incompatible brands. It took about 3 months till I started to feel better & it was fairly dramatic after that. I went from being bedbound & so weak I could not even talk nor sit up or reach for a glass of water on the table next to me, to being able to cook & wash dishes & care for myself. I went off once for about 3 months after a Nurse let it drip too fast & did not slow it down after I told her I was starting to have an allergic reaction by itching all over. So I had to go off it for about 3 months & my general health started deteriorating very noticeably. But after I slowly started it again by building up the dosage I regained my former level of energy & health. I have some flu like symptoms sometimes But have not developed any infections nor complications at all. As far as I understand it does not repair the body but replaces what we do not have enough of to assist in our immune systems functions. So if we stop it does not necessarily continue to help. But I have heard some people say that it helped them get stronger so they could get off of it. I hope this answers your questions. C.J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2004 Report Share Posted September 18, 2004 Wow 40 grams weekly. And someone on lyement gets 75 grams, in 3 doses (25 grams a day for 3 days) every 6 weeks. I am starting with so much lower doses! I'm going to do it again Monday or Tuesday. Last few times I stopped after 3 grams. I think I'll try the whole 5 gram bottle. I infuse very slowly. Can you describe the changes you've seen, since initiating the therapy. Also were they instantaneous (first time) or slowly accumulating, as for instance, perhaps your body repaired itself over time. Thx! > Lea, > I get GG IV 40 grams weekly. > You can also get it by IM but you need a different kind for IM > I have an in-home Nurse who comes to administer it > I got it in a hospital a few times many years ago & I got ot the first few > times in my Drs. office so it could be monitored & adjusted. > I know a few people who actually infuse themselves but that is difficult. > I had blood tests done to determine my diagnosis & medical justification for > it. > I am re-sending the letter I posted before. > > I wanted to share this for those of you interested in getting GG IV > > Here is some excerpts from my Drs. letter. Maybe your Drs. could paraphrase > it & use anything relevant to your medical condition to help. > > He says I have 2 major diagnosis's related to the use of IVIG. > The first is Immune deficiency (279.13) probably subtype Nezelof's syndrome > (279.13). The 2nd is Chronic Fatigue Immune Dysfunction Syndrome (279.8) He > says I have multiple abnormalities on cellular immune function on multiple > assessments. Including diminished B cell levels of 90 (250-750), diminished > absolute lymphocyte count of only 882, diminished CD-4 at 337, diminished natural > killer cells count of 35, diminshed total T lymphocytes & activated T > lymphocytes. Dysgammaglubulinemia has been clearly documented with multiple > dysfunctions antibodies including autoantibodies against thyroid & multiples > allergic antibodies. Nezelof's Syndrome is defined as cellular immune dysfunction > with Dysgammaglobulinemia, ususally but not always with a diminsihed B cell > count. There is extensive documentations in the immunology literature concerning > the use of IVIG therapy in Nezelof's syndrome & other immune deficiency > states. > With respect to her second diagnosis of Chronic Fatigue Immune Dysfunction > Syndrome, the diagnostic documentation is based on not only immune system > parameters but very high antibody titers to Epstein Barr Virus & Cytomegalovirus > as well as Human Herpes # 6, all classic CFIDS agents plus the clinical > presentation of major & minor criteria for CFIDS. The use of IVIG in FCIDS is less > established althought most Physicians treating CFIDS have found major benefit > from IVIG therapy. The main published article in medical literature is: > Lloyd, , et al; A Double Blind, Placebo Controlled Trial of Intravenous > Immunoglobulin Therapy in Patients with Chronic Fatigue Syndrome; The American > Journal of Medicine, November, 1990, volume 89, p.561-567 > In my opinion the medical necessity for IVIG therapy is high to urgent > considering the complexity & severity of her illness & disability, with excellent > medical justification. > > Hope this helps > Good luck all, > CJ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2004 Report Share Posted September 18, 2004 That is very interesting, thx a lot. Im glad to hear you started with a similarly low dose as me. I don't like the glucose in the baxter brand but that's what my doc uses so i'm not going to complain. it also has glycine. these things help osmolarity apparently. i do notice i get VERY hungry during the gamma, which i personally think is the glucose (i maintain a pretty low sugar diet and have for years because of candida). thank god last time someone there had nuts and raisins, which i basically ate all of. so i guess i will tkae it slowly and build up. i did talk to baxter and they said the slower the better, that's ideal. i don't mind the self-limiting reactions (muscle aches, and one time, a low grade fever) as i feel that is the gamma working, maybe killing some stuff. i do for some reason have some kind of gallbladder reaction and i wonder if it is killing some kind of parasites or candida in the liver/gallbladder area. gallbladder is already sensitive for years now, and a few days later i start having some gallbladder symptoms, where if i eat fats i get discomfort and last time i got a headache (not a lyme headache, was different) and felt lousy for a day. i do understand it is a temporary fix (the antibodies supposedly last about a month). but i am thinking that that temporary fix might allow some self repair of the body, since chronic infections do damage through inflammatory responses etc. in any case, the magical odd thing about it, is every time i get it, for a short window of time i feel completely well. it is really hard to explain. its a subjective feeling. it doesn't last that long tho but it reminds me of how i probably felt as a teenager. > Hi Jen, > I started out with about 2 & 1/2 grams & slowly went up to 5 & then 15 & > then stayed at 20 for quite a while. > I had to try different brands of Gam to see which I tolerated best. I think > because of my sensitivities the base made a difference. > I seem to do best on the Glycine base of Bayer's brands. > It took about 3 months to find the right brand & dosage & drip speed. I > was very sick at first & had a lot of migraines. I think mostly because of the > incompatible brands. > It took about 3 months till I started to feel better & it was fairly > dramatic after that. I went from being bedbound & so weak I could not even talk nor > sit up or reach for a glass of water on the table next to me, to being able > to cook & wash dishes & care for myself. > I went off once for about 3 months after a Nurse let it drip too fast & did > not slow it down after I told her I was starting to have an allergic > reaction by itching all over. So I had to go off it for about 3 months & my general > health started deteriorating very noticeably. > But after I slowly started it again by building up the dosage I regained my > former level of energy & health. I have some flu like symptoms sometimes But > have not developed any infections nor complications at all. > As far as I understand it does not repair the body but replaces what we do > not have enough of to assist in our immune systems functions. So if we stop > it does not necessarily continue to help. But I have heard some people say > that it helped them get stronger so they could get off of it. > I hope this answers your questions. > C.J. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2004 Report Share Posted September 18, 2004 Hi Lea, I think It was Great Smokies laboratory but it was over 10 yrs ago so I cannot remember But my insurance did cover it. I am sure your Dr. will know if your insurance covers it & also would know which ones to order after reading the info I posted Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2004 Report Share Posted September 18, 2004 Hi CJ: THank you for an informative reply. I believe you listed below all the tests that helped get you covered by insurance; but, are these tests done at a local or a special lab? thank you so much best, lea > Lea, > I get GG IV 40 grams weekly. > You can also get it by IM but you need a different kind for IM > I have an in-home Nurse who comes to administer it > I got it in a hospital a few times many years ago & I got ot the first few > times in my Drs. office so it could be monitored & adjusted. > I know a few people who actually infuse themselves but that is difficult. > I had blood tests done to determine my diagnosis & medical justification for > it. > I am re-sending the letter I posted before. > > I wanted to share this for those of you interested in getting GG IV > > Here is some excerpts from my Drs. letter. Maybe your Drs. could paraphrase > it & use anything relevant to your medical condition to help. > > He says I have 2 major diagnosis's related to the use of IVIG. > The first is Immune deficiency (279.13) probably subtype Nezelof's syndrome > (279.13). The 2nd is Chronic Fatigue Immune Dysfunction Syndrome (279.8) He > says I have multiple abnormalities on cellular immune function on multiple > assessments. Including diminished B cell levels of 90 (250-750), diminished > absolute lymphocyte count of only 882, diminished CD-4 at 337, diminished natural > killer cells count of 35, diminshed total T lymphocytes & activated T > lymphocytes. Dysgammaglubulinemia has been clearly documented with multiple > dysfunctions antibodies including autoantibodies against thyroid & multiples > allergic antibodies. Nezelof's Syndrome is defined as cellular immune dysfunction > with Dysgammaglobulinemia, ususally but not always with a diminsihed B cell > count. There is extensive documentations in the immunology literature concerning > the use of IVIG therapy in Nezelof's syndrome & other immune deficiency > states. > With respect to her second diagnosis of Chronic Fatigue Immune Dysfunction > Syndrome, the diagnostic documentation is based on not only immune system > parameters but very high antibody titers to Epstein Barr Virus & Cytomegalovirus > as well as Human Herpes # 6, all classic CFIDS agents plus the clinical > presentation of major & minor criteria for CFIDS. The use of IVIG in FCIDS is less > established althought most Physicians treating CFIDS have found major benefit > from IVIG therapy. The main published article in medical literature is: > Lloyd, , et al; A Double Blind, Placebo Controlled Trial of Intravenous > Immunoglobulin Therapy in Patients with Chronic Fatigue Syndrome; The American > Journal of Medicine, November, 1990, volume 89, p.561-567 > In my opinion the medical necessity for IVIG therapy is high to urgent > considering the complexity & severity of her illness & disability, with excellent > medical justification. > > Hope this helps > Good luck all, > CJ > > > Quote Link to comment Share on other sites More sharing options...
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