Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Our daughter has been on Immunovir for 2 months. After a 3 or 4 weeks on it, she had a couple weeks of being really miserable, whining and crying a lot, much less enjoyment of activities. We brought her to a doctor but she had no symptoms and they found nothing in numerous blood tests. Has anyone seen this with your child. We are wondering if this could be related to the immunovir? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2009 Report Share Posted October 31, 2009 We are getting ready to start immunovir. I'd love to hear how it's affecting your children. Also, did you have trouble getting ahold of the pharmacy to set up your account?? Thanks! > > > We're supposed to take two weeks off? > > Kristy > > From: groups (DOT) com <mailto:% 40groups. com> <mailto:% 40groups. com> > [mailto:groups (DOT) com <mailto:% 40groups. com> <mailto:% 40groups. com>] On Behalf Of > and Daron Freedberg > Sent: Saturday, October 31, 2009 7:51 AM > groups (DOT) com <mailto:% 40groups. com> <mailto:% 40groups. com> > Subject: Immunovir and blood work after the 2 week vacation > > > > Hi Everyone, > > For those of you whose children are taking Immunovir, how has their > blood work looked after the 2 week vacation? Did > their numbers stay consistent or did they get worse? Did you return to > the Immunovir after the 2 weeks off? > > Thanks for the info, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2009 Report Share Posted October 31, 2009 I had no problem getting in touch with the pharmacy, and I think my order shipped the same day. I think my son feels better. No " wows " . Maybe more language. And, more affectionate and engaged. But all of that always comes from him when he feels better. Kristy From: [mailto: ] On Behalf Of Curtis and Hackler Sent: Saturday, October 31, 2009 12:37 PM Subject: RE: Immunovir We are getting ready to start immunovir. I'd love to hear how it's affecting your children. Also, did you have trouble getting ahold of the pharmacy to set up your account?? Thanks! > > > We're supposed to take two weeks off? > > Kristy > > From: groups (DOT) com <mailto:% 40groups. com> <mailto:% 40groups. com> > [mailto:groups (DOT) com <mailto:% 40groups. com> <mailto:% 40groups. com>] On Behalf Of > and Daron Freedberg > Sent: Saturday, October 31, 2009 7:51 AM > groups (DOT) com <mailto:% 40groups. com> <mailto:% 40groups. com> > Subject: Immunovir and blood work after the 2 week vacation > > > > Hi Everyone, > > For those of you whose children are taking Immunovir, how has their > blood work looked after the 2 week vacation? Did > their numbers stay consistent or did they get worse? Did you return to > the Immunovir after the 2 weeks off? > > Thanks for the info, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2009 Report Share Posted October 31, 2009 I don't notice much of a difference but Dr G was happier with her blood work. I agree with Kristy, no " wows " . Curtis and Hackler wrote: > > > We are getting ready to start immunovir. I'd love to hear how it's > affecting your children. Also, did you have trouble getting ahold of > the pharmacy to set up your account?? > Thanks! > > > > > > > > We're supposed to take two weeks off? > > > > Kristy > > > > From: groups (DOT) com <mailto:% 40groups. com> > <mailto:% 40groups. com> > > [mailto:groups (DOT) com <mailto:% 40groups. com> > <mailto:% 40groups. com>] On Behalf Of > > and Daron Freedberg > > Sent: Saturday, October 31, 2009 7:51 AM > > groups (DOT) com <mailto:% 40groups. com> > <mailto:% 40groups. com> > > Subject: Immunovir and blood work after the 2 week vacation > > > > > > > > Hi Everyone, > > > > For those of you whose children are taking Immunovir, how has their > > blood work looked after the 2 week vacation? Did > > their numbers stay consistent or did they get worse? Did you return to > > the Immunovir after the 2 weeks off? > > > > Thanks for the info, > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2009 Report Share Posted November 1, 2009 My son has been on it since June. In general, he is more energetic and just acts " healthier " . He has always had chronic sinus problems and post nasal drip, and since Immunovir his sinus is clearer. His lab work is better too. It took me a good 2 months on it to realize the difference. And I really did not notice anything during the 2 weeks off. > > > > > > > > > We're supposed to take two weeks off? > > > > > > Kristy > > > > > > From: groups (DOT) com <mailto:% 40groups. com> > > <mailto:% 40groups. com> > > > [mailto:groups (DOT) com <mailto:% 40groups. com> > > <mailto:% 40groups. com>] On Behalf Of > > > and Daron Freedberg > > > Sent: Saturday, October 31, 2009 7:51 AM > > > groups (DOT) com <mailto:% 40groups. com> > > <mailto:% 40groups. com> > > > Subject: Immunovir and blood work after the 2 week vacation > > > > > > > > > > > > Hi Everyone, > > > > > > For those of you whose children are taking Immunovir, how has their > > > blood work looked after the 2 week vacation? Did > > > their numbers stay consistent or did they get worse? Did you return to > > > the Immunovir after the 2 weeks off? > > > > > > Thanks for the info, > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 I got a hold of the pharmacy right away, received the imunovir a few days later. My son has been on it about a month. He seems like he feels better, looks good, he's having a growth spurt! His language is really the 'wow' right now. He's expressing new ideas and expanding on his play schemes. Kristy From: [mailto: ] On Behalf Of chocolatiluv Sent: Sunday, November 01, 2009 5:17 PM Subject: Re: Immunovir > > > > > > We're supposed to take two weeks off? > > > > Kristy > > > > From: groups (DOT) com <mailto:% 40groups. com> > <mailto:% 40groups. com> > > [mailto:groups (DOT) com <mailto:% 40groups. com> > <mailto:% 40groups. com>] On Behalf Of > > and Daron Freedberg > > Sent: Saturday, October 31, 2009 7:51 AM > > groups (DOT) com <mailto:% 40groups. com> > <mailto:% 40groups. com> > > Subject: Immunovir and blood work after the 2 week vacation > > > > > > > > Hi Everyone, > > > > For those of you whose children are taking Immunovir, how has their > > blood work looked after the 2 week vacation? Did > > their numbers stay consistent or did they get worse? Did you return to > > the Immunovir after the 2 weeks off? > > > > Thanks for the info, > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 Did you get it? My son gets 1/2 tablet 4 times a day Monday – Friday and 2 times a day on Sat & Sun. I had to make a pill bottle for my son for school (good thing I’m a pro at Photoshop). Another parent on this list gave me the idea (thanks!). Kristy From: [mailto: ] On Behalf Of Laureen Forman Sent: Saturday, October 31, 2009 9:41 AM Subject: Immunovir Hi Everyone - I¹m getting my Immunovir probably on Monday does it come with the dosing instructions? Dr. G told me them at our appointment but I didn¹t write them down. I know I can call his office but was hoping that the dosing comes with it. Thank you, Laureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 I sent him an email with a scan of my signed order page, instead of faxing, and asked him to reply back that he had received it. Kristy From: [mailto: ] On Behalf Of Laureen Forman Sent: Saturday, October 31, 2009 1:45 PM Subject: Re: Immunovir We had an issue with them not getting the fax with the required information. It took about a day for him to call me back from the initial phone message. He did not let me know he did not get the fax so, there was a week lag time. He did confirm the fax the second time we sent it though. Laureen On 10/31/09 12:51 PM, " Kristy Nardini " <knardini@... <mailto:knardini%40roadrunner.com> > wrote: > > > > > I had no problem getting in touch with the pharmacy, and I think my order > shipped the same day. > > I think my son feels better. No " wows " . Maybe more language. And, more > affectionate and engaged. But all of that always comes from him when he > feels better. > > Kristy > > From: <mailto:%40> <mailto:%40> > [mailto: <mailto:%40> <mailto:%40> ] On Behalf Of > Curtis > and Hackler > Sent: Saturday, October 31, 2009 12:37 PM > <mailto:%40> <mailto:%40> > Subject: RE: Immunovir > > > We are getting ready to start immunovir. I'd love to hear how it's > affecting your children. Also, did you have trouble getting ahold of the > pharmacy to set up your account?? > Thanks! > > >> > >> > >> > We're supposed to take two weeks off? >> > >> > Kristy >> > >> > From: groups (DOT) com <mailto:% 40groups. com> > <mailto:% 40groups. com> >> > [mailto:groups (DOT) com <mailto:% 40groups. com> > <mailto:% 40groups. com>] On Behalf Of >> > and Daron Freedberg >> > Sent: Saturday, October 31, 2009 7:51 AM >> > groups (DOT) com <mailto:% 40groups. com> > <mailto:% 40groups. com> >> > Subject: Immunovir and blood work after the 2 week vacation >> > >> > >> > >> > Hi Everyone, >> > >> > For those of you whose children are taking Immunovir, how has their >> > blood work looked after the 2 week vacation? Did >> > their numbers stay consistent or did they get worse? Did you return to >> > the Immunovir after the 2 weeks off? >> > >> > Thanks for the info, >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 Look through the paperwork that comes with the Imunovir. They usually include a copy of the RX. Robyn ________________________________ From: Kristy Nardini <knardini@...> Sent: Mon, November 16, 2009 11:13:31 AM Subject: RE: Immunovir  Did you get it? My son gets 1/2 tablet 4 times a day Monday – Friday and 2 times a day on Sat & Sun. I had to make a pill bottle for my son for school (good thing I’m a pro at Photoshop). Another parent on this list gave me the idea (thanks!). Kristy From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Laureen Forman Sent: Saturday, October 31, 2009 9:41 AM groups (DOT) com Subject: Immunovir Hi Everyone - I¹m getting my Immunovir probably on Monday  does it come with the dosing instructions? Dr. G told me them at our appointment but I didn¹t write them down. I know I can call his office but was hoping that the dosing comes with it. Thank you, Laureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 Mine did not. I had to call Dr. G’s office to get the info. Kristy From: [mailto: ] On Behalf Of Robyn & Greg Coggins Sent: Monday, November 16, 2009 2:42 PM Subject: Re: Immunovir Look through the paperwork that comes with the Imunovir. They usually include a copy of the RX. Robyn ________________________________ From: Kristy Nardini <knardini@... <mailto:knardini%40roadrunner.com> > <mailto:%40> Sent: Mon, November 16, 2009 11:13:31 AM Subject: RE: Immunovir Did you get it? My son gets 1/2 tablet 4 times a day Monday – Friday and 2 times a day on Sat & Sun. I had to make a pill bottle for my son for school (good thing I’m a pro at Photoshop). Another parent on this list gave me the idea (thanks!). Kristy From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Laureen Forman Sent: Saturday, October 31, 2009 9:41 AM groups (DOT) com Subject: Immunovir Hi Everyone - I¹m getting my Immunovir probably on Monday  does it come with the dosing instructions? Dr. G told me them at our appointment but I didn¹t write them down. I know I can call his office but was hoping that the dosing comes with it. Thank you, Laureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 Kristy did your child have low NK cells cd56 and does Dr G only give if so? I don't believe from past bloodtests that my child has low NK cells otherwise a typ kids HHV6 etc. thks Kavita > From: Kristy Nardini <knardini@...> > Subject: RE: REPOSTING: NIH study on recovered children > > Date: Thursday, January 28, 2010, 4:56 PM > > > > > > > > > > > > > > > > Â > > > > > > > > > > Thanks! There is a link, too, I believe that I > cannot find but I just > > emailed the person who sent it to me and I'll post back > when I get it. > > > > Kristy Nardini > > TazziniTM Stainless Steel Bottles > > www.tazzini. com > > kristytazzini (DOT) > com > > Phone: 858.243.1929 > > Fax: 858.724.1418 > > > > P Please consider the environment before printing this > email. > > > > From: groups (DOT) > com [mailto:groups (DOT) > com] On Behalf Of > > Neno/Natasa > > Sent: Thursday, January 28, 2010 1:45 PM > > groups (DOT) > com > > Subject: REPOSTING: NIH study on recovered children > > > > > > > > FLYER IN ATTACHMENT > > > > / Black, PhD/// > > > > /National Institute of Mental Health/ > > > > /Pediatrics and Developmental Neuroscience Branch / > > > > /10 Center Drive MSC 1255 / > > > > /Building 10, Room 4N208 / > > > > /Bethesda, land 20892-1255 / > > > > / / > > > > /Phone: (301) 435-6205/ > > > > Fax: (301) 402-8497 > > ------ End of Forwarded Message > > > > ------ End of Forwarded Message > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 Hi Kavita, Where on my son’s labwork would I look for the NK cell count? I looked over the last couple of lab reports and didn’t see that on there. He had, at one point, very high HHV-6 titers (10,000+:1). They were way down before he started on Imunovir. He has also been on Gamastan injections for 2+ years. Kristy From: [mailto: ] On Behalf Of kavita mallik Sent: Thursday, January 28, 2010 4:36 PM Subject: RE: Immunovir Kristy did your child have low NK cells cd56 and does Dr G only give if so? I don't believe from past bloodtests that my child has low NK cells otherwise a typ kids HHV6 etc. thks Kavita > From: Kristy Nardini <knardini@... <mailto:knardini%40roadrunner.com> > > Subject: RE: REPOSTING: NIH study on recovered children > <mailto:%40> > Date: Thursday, January 28, 2010, 4:56 PM > > > > > > > > > > > > > > > > > > > > > > > > > > Thanks! There is a link, too, I believe that I > cannot find but I just > > emailed the person who sent it to me and I'll post back > when I get it. > > > > Kristy Nardini > > TazziniTM Stainless Steel Bottles > > www.tazzini. com > > kristytazzini (DOT) > com > > Phone: 858.243.1929 > > Fax: 858.724.1418 > > > > P Please consider the environment before printing this > email. > > > > From: groups (DOT) > com [mailto:groups (DOT) > com] On Behalf Of > > Neno/Natasa > > Sent: Thursday, January 28, 2010 1:45 PM > > groups (DOT) > com > > Subject: REPOSTING: NIH study on recovered children > > > > > > > > FLYER IN ATTACHMENT > > > > / Black, PhD/// > > > > /National Institute of Mental Health/ > > > > /Pediatrics and Developmental Neuroscience Branch / > > > > /10 Center Drive MSC 1255 / > > > > /Building 10, Room 4N208 / > > > > /Bethesda, land 20892-1255 / > > > > / / > > > > /Phone: (301) 435-6205/ > > > > Fax: (301) 402-8497 > > ------ End of Forwarded Message > > > > ------ End of Forwarded Message > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2010 Report Share Posted January 29, 2010 Kristy, The NK cell count should be in the Lymphocyte Subset Panel section of the lab work. You can see some lab work examples by clicking on the following link. http://www.stopcallingitautism.com/labsandresearchinformation.php Regards, JR From: knardini@... Date: Thu, 28 Jan 2010 21:40:52 -0800 Subject: RE: Immunovir Hi Kavita, Where on my son’s labwork would I look for the NK cell count? I looked over the last couple of lab reports and didn’t see that on there. He had, at one point, very high HHV-6 titers (10,000+:1). They were way down before he started on Imunovir. He has also been on Gamastan injections for 2+ years. Kristy From: [mailto: ] On Behalf Of kavita mallik Sent: Thursday, January 28, 2010 4:36 PM Subject: RE: Immunovir Kristy did your child have low NK cells cd56 and does Dr G only give if so? I don't believe from past bloodtests that my child has low NK cells otherwise a typ kids HHV6 etc. thks Kavita > From: Kristy Nardini <knardini@... <mailto:knardini%40roadrunner.com> > > Subject: RE: REPOSTING: NIH study on recovered children > <mailto:%40> > Date: Thursday, January 28, 2010, 4:56 PM > > > > > > > > > > > > > > > > > > > > > > > > > > Thanks! There is a link, too, I believe that I > cannot find but I just > > emailed the person who sent it to me and I'll post back > when I get it. > > > > Kristy Nardini > > TazziniTM Stainless Steel Bottles > > www.tazzini. com > > kristytazzini (DOT) > com > > Phone: 858.243.1929 > > Fax: 858.724.1418 > > > > P Please consider the environment before printing this > email. > > > > From: groups (DOT) > com [mailto:groups (DOT) > com] On Behalf Of > > Neno/Natasa > > Sent: Thursday, January 28, 2010 1:45 PM > > groups (DOT) > com > > Subject: REPOSTING: NIH study on recovered children > > > > > > > > FLYER IN ATTACHMENT > > > > / Black, PhD/// > > > > /National Institute of Mental Health/ > > > > /Pediatrics and Developmental Neuroscience Branch / > > > > /10 Center Drive MSC 1255 / > > > > /Building 10, Room 4N208 / > > > > /Bethesda, land 20892-1255 / > > > > / / > > > > /Phone: (301) 435-6205/ > > > > Fax: (301) 402-8497 > > ------ End of Forwarded Message > > > > ------ End of Forwarded Message > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2010 Report Share Posted January 29, 2010 They may not be run with every lab work. Check through some more and you should come upon it. hth, Robyn ________________________________ From: Kristy Nardini <knardini@...> Sent: Thu, January 28, 2010 9:40:52 PM Subject: RE: Immunovir Hi Kavita, Where on my son’s labwork would I look for the NK cell count? I looked over the last couple of lab reports and didn’t see that on there. He had, at one point, very high HHV-6 titers (10,000+:1). They were way down before he started on Imunovir. He has also been on Gamastan injections for 2+ years. Kristy From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of kavita mallik Sent: Thursday, January 28, 2010 4:36 PM groups (DOT) com Subject: RE: Immunovir Kristy did your child have low NK cells cd56 and does Dr G only give if so? I don't believe from past bloodtests that my child has low NK cells otherwise a typ kids HHV6 etc. thks Kavita > From: Kristy Nardini <knardini@roadrunner .com <mailto:knardini% 40roadrunner. com> > > Subject: RE: REPOSTING: NIH study on recovered children > groups (DOT) com <mailto:% 40groups. com> > Date: Thursday, January 28, 2010, 4:56 PM > > > > > > > > > > > > > > > > > > > > > > > > > > Thanks! There is a link, too, I believe that I > cannot find but I just > > emailed the person who sent it to me and I'll post back > when I get it. > > > > Kristy Nardini > > TazziniTM Stainless Steel Bottles > > www.tazzini. com > > kristytazzini (DOT) > com > > Phone: 858.243.1929 > > Fax: 858.724.1418 > > > > P Please consider the environment before printing this > email. > > > > From: groups (DOT) > com [mailto:@ groups. > com] On Behalf Of > > Neno/Natasa > > Sent: Thursday, January 28, 2010 1:45 PM > > groups (DOT) > com > > Subject: REPOSTING: NIH study on recovered children > > > > > > > > FLYER IN ATTACHMENT > > > > / Black, PhD/// > > > > /National Institute of Mental Health/ > > > > /Pediatrics and Developmental Neuroscience Branch / > > > > /10 Center Drive MSC 1255 / > > > > /Building 10, Room 4N208 / > > > > /Bethesda, land 20892-1255 / > > > > / / > > > > /Phone: (301) 435-6205/ > > > > Fax: (301) 402-8497 > > ------ End of Forwarded Message > > > > ------ End of Forwarded Message > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2010 Report Share Posted March 7, 2010 Hi Kerri, Visits at the office are covered by insurance, and all '' labs (except the food screen) are covered by insurance. Phone consults are not covered, but that's what the follow up visits usually are if you aren't close enough to the office to go in for follow up. If you are a couple of hours away, it might be worth making the monthly drive. The meds (except Immunovir) are typically covered by insurance too, so you should just have your copay. ..HTH ________________________________ From: kerrilong81 <kerrilong81@...> Sent: Thu, March 4, 2010 8:28:58 AM Subject: immunovir  Hi All! I'm new to the group. Just listening and learning about the protocol. I have a few questions. I will be making an apt with Dr in NY since I live on the east coast. Are the visits covered by insurance? On the first visit will they order tests and start the diet? I would assume a follow-up visit would occur and meds prescribed then. Am I correct about the order? Are phone follow-ups done? Last question. What does Immunovir do? Kerri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2010 Report Share Posted March 7, 2010 Thanks for your response. Sounds like to need to call Dr. Russel's office to see if he excepts my insurance. Kerri ________________________________ From: <thecolemans4@...> Sent: Sun, March 7, 2010 12:01:19 PM Subject: Re: immunovir  Hi Kerri, Visits at the office are covered by insurance, and all '' labs (except the food screen) are covered by insurance. Phone consults are not covered, but that's what the follow up visits usually are if you aren't close enough to the office to go in for follow up. If you are a couple of hours away, it might be worth making the monthly drive. The meds (except Immunovir) are typically covered by insurance too, so you should just have your copay. ..HTH ____________ _________ _________ __ From: kerrilong81 <kerrilong81> groups (DOT) com Sent: Thu, March 4, 2010 8:28:58 AM Subject: immunovir  Hi All! I'm new to the group. Just listening and learning about the protocol. I have a few questions. I will be making an apt with Dr in NY since I live on the east coast. Are the visits covered by insurance? On the first visit will they order tests and start the diet? I would assume a follow-up visit would occur and meds prescribed then. Am I correct about the order? Are phone follow-ups done? Last question. What does Immunovir do? Kerri Quote Link to comment Share on other sites More sharing options...
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