Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 Hi, my son 4, just switched from Famvir to Acyclovir and this is day #4, behavior is horrific, lots of yelling, obessiveness, etc....anyone experience the same? Hope this is just die off and I will smile, but this has been the biggest regression in a long time. Thanks for any advice. Sincerely Noel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Noel We have been on Acyclovir for over a tear now and the initial die-off was the worst we ever saw. (We were on Valtrex and then Famir prior). We had the best recovery from it as well. The frequency is a pain but I believe the constant presence in his blood is what made the difference. Good Luck. Bill ________________________________ From: NOEL SCHNEIDER <schneid99@...> nids Sent: Thursday, May 21, 2009 10:49:35 PM Subject: Re: Acyclovir Hi, my son 4, just switched from Famvir to Acyclovir and this is day #4, behavior is horrific, lots of yelling, obessiveness, etc....anyone experience the same? Hope this is just die off and I will smile, but this has been the biggest regression in a long time. Thanks for any advice. Sincerely Noel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Thanks Bill, We were on Valtrex and Famvir as well, you are so right, this is a pretty bad die off period. Looking forward to a big recovery. I appreciate your input, it is so difficult to step back. Thanks again! Sincerely Noel From: Bill klimas <klimas_bill@...> Subject: Re: Re: Acyclovir Date: Friday, May 22, 2009, 6:32 AM Noel We have been on Acyclovir for over a tear now and the initial die-off was the worst we ever saw. (We were on Valtrex and then Famir prior). We had the best recovery from it as well. The frequency is a pain but I believe the constant presence in his blood is what made the difference. Good Luck. Bill ____________ _________ _________ __ From: NOEL SCHNEIDER <schneid99@sbcglobal .net> nidsgroups (DOT) com Sent: Thursday, May 21, 2009 10:49:35 PM Subject: Re: Acyclovir Hi, my son 4, just switched from Famvir to Acyclovir and this is day #4, behavior is horrific, lots of yelling, obessiveness, etc....anyone experience the same? Hope this is just die off and I will smile, but this has been the biggest regression in a long time. Thanks for any advice. Sincerely Noel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Bill, thank you for sharing this, would you let us know why you´ve switched to acyclovir, i mean, how after not having much success with other antivirals - and supposedly more powerful - you still thought you had to keep trying with other one? it was titers outcome in tests? what was the dose/weight and frequency? Thank you > > Noel > We have been on Acyclovir for over a tear now and the initial die-off was the worst we ever saw. (We were on Valtrex and then Famir prior). We had the best recovery from it as well. The frequency is a pain but I believe the constant presence in his blood is what made the difference. > Good Luck. > Bill > > > > > ________________________________ > From: NOEL SCHNEIDER <schneid99@...> > nids > Sent: Thursday, May 21, 2009 10:49:35 PM > Subject: Re: Acyclovir > > > > > > > Hi, > > my son 4, just switched from Famvir to Acyclovir and this is day #4, behavior is horrific, lots of yelling, obessiveness, etc....anyone experience the same? > > Hope this is just die off and I will smile, but this has been the biggest regression in a long time. > > Thanks for any advice. > > Sincerely Noel > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 We were on Valtrex for quite a while. Although the viral tiers were lowered they would bounce back up. I asked about Acyclovir in regard to the cost of Valtrex but Dr G switched us to Famir first. Tiers went up again. Finnally we went to Acyclovir. To be honest I am not sure what did the trick. At the time the schools and other family members were really trashing the diet. I finally went off!!! got the food right shortly after we went on acyclovir. Tiers dropped greatly and we had steady improvements. When we started Immunovir is when it all came together. It took a while but the activation % finnally dropped and verbal language just went nuts. Our IGE is still high but I suspect enviromental stuff and we are being tested for airborn allergies next. In regard to weight Connor is 90 lbs and we take 800 mg of Acylovir five times daily and we take 500 mg Immmunovir 5 times daily on weekdays and twice daily on weekends. We had our first interview with the allergist in Fort Lauderdale last week and her assistant questioned the A word Diagosis. She said Connor did not seem Autistic. Eye contact, Talking, Calmly answering questions. I said you should have seen him two years ago. Then she said but we all know those off the wall treatments really don't work. I explained I did not care what the Big Med people call it but I am treating the identifiable dease issues not Autism. As always with mainstrem doc she rolled her eyes and chuckled, then asked Connor how old he was. He answered, 11. March 26, in 2010 it will be a friday. So I asked him what day will his birthday be in 2020, He said Thursday. I chuckled! She left the room. Bill ________________________________ From: Martín W <engranajes@...> Sent: Friday, May 22, 2009 2:48:40 PM Subject: Re: Acyclovir Bill, thank you for sharing this, would you let us know why you´ve switched to acyclovir, i mean, how after not having much success with other antivirals - and supposedly more powerful - you still thought you had to keep trying with other one? it was titers outcome in tests? what was the dose/weight and frequency? Thank you > > Noel > We have been on Acyclovir for over a tear now and the initial die-off was the worst we ever saw. (We were on Valtrex and then Famir prior). We had the best recovery from it as well. The frequency is a pain but I believe the constant presence in his blood is what made the difference. > Good Luck. > Bill > > > > > ____________ _________ _________ __ > From: NOEL SCHNEIDER <schneid99@. ..> > nidsgroups (DOT) com > Sent: Thursday, May 21, 2009 10:49:35 PM > Subject: Re: Acyclovir > > > > > > > Hi, > > my son 4, just switched from Famvir to Acyclovir and this is day #4, behavior is horrific, lots of yelling, obessiveness, etc....anyone experience the same? > > Hope this is just die off and I will smile, but this has been the biggest regression in a long time. > > Thanks for any advice. > > Sincerely Noel > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2009 Report Share Posted May 24, 2009 Noel, For us acyclovir did not work as well as famvir or Valtrex and it needed to be given more often which made it difficult. Maybe it didn't work as well because it was difficult for me to get him to take it five times a day. Not sure Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2009 Report Share Posted May 24, 2009 Thank you Bill for this! I was surpriced about dose but I found many links suporting that, we did isoprinosine 500mg x 2 only continuosly for 3 months with no gains, then I concluded it was useless unfortunately. I think it deserves another try. Bill, for how long were you on that? > > > > Noel > > We have been on Acyclovir for over a tear now and the initial die-off was the worst we ever saw. (We were on Valtrex and then Famir prior). We had the best recovery from it as well. The frequency is a pain but I believe the constant presence in his blood is what made the difference. > > Good Luck. > > Bill > > > > > > > > > > ____________ _________ _________ __ > > From: NOEL SCHNEIDER <schneid99@ ..> > > nidsgroups (DOT) com > > Sent: Thursday, May 21, 2009 10:49:35 PM > > Subject: Re: Acyclovir > > > > > > > > > > > > > > Hi, > > > > my son 4, just switched from Famvir to Acyclovir and this is day #4, behavior is horrific, lots of yelling, obessiveness, etc....anyone experience the same? > > > > Hope this is just die off and I will smile, but this has been the biggest regression in a long time. > > > > Thanks for any advice. > > > > Sincerely Noel > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2009 Report Share Posted May 24, 2009 We started last Nov but had a short spell in late Dec that we ran out and it took until mid Jan to get a new supply. Dr K recommends a one year period and expects the gains to plateau at 6-8 months. our T cell count is up at that time like I stated. I truly believe that it made a major difference. ________________________________ From: Martín W <engranajes@...> Sent: Sunday, May 24, 2009 1:32:12 PM Subject: Re: Acyclovir Thank you Bill for this! I was surpriced about dose but I found many links suporting that, we did isoprinosine 500mg x 2 only continuosly for 3 months with no gains, then I concluded it was useless unfortunately. I think it deserves another try. Bill, for how long were you on that? > > > > Noel > > We have been on Acyclovir for over a tear now and the initial die-off was the worst we ever saw. (We were on Valtrex and then Famir prior). We had the best recovery from it as well. The frequency is a pain but I believe the constant presence in his blood is what made the difference. > > Good Luck. > > Bill > > > > > > > > > > ____________ _________ _________ __ > > From: NOEL SCHNEIDER <schneid99@ ..> > > nidsgroups (DOT) com > > Sent: Thursday, May 21, 2009 10:49:35 PM > > Subject: Re: Acyclovir > > > > > > > > > > > > > > Hi, > > > > my son 4, just switched from Famvir to Acyclovir and this is day #4, behavior is horrific, lots of yelling, obessiveness, etc....anyone experience the same? > > > > Hope this is just die off and I will smile, but this has been the biggest regression in a long time. > > > > Thanks for any advice. > > > > Sincerely Noel > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2009 Report Share Posted May 24, 2009 Hi all, We've had our son Lucas (who will turn 3 in late August) on Dr. G's protocol since summer of 2008. I read this message board all the time but don't think I've ever posted before. Anyway, this thread sparked my interest because of our present situation. We switched Lucas to Acyclovir on April 22 after first trying Valtrex and then Famvir. The first two weeks after the switch were heaven: Lucas was bright and verbal and started stringing words together for the first time. We also took him to several parks and playgrounds and watched him act in such a typical way that we almost felt like normal parents for once. We had no die-off whatsoever. It was awesome! Then, everything went south. The past three weeks have been horrible. Lucas's behavior has deteriorated so drastically that I feel like we went from having an almost normal kid to a severely autistic child: Screaming fits, stimming like crazy, non-stop body movements, humming, etc. Dr. G said the downturn can't be attributed to the Acyclovir because it would have presented itself in the first couple weeks, which it didn't. But we didn't change ANYTHING else in his diet our routine. We did just travel from Mississippi to L.A. a couple days ago for our annual office visit (worst trip ever due to his behavior) but this stuff started two weeks before the trip. Does anyone have any theories on this, or has anyone experienced a delayed die-off? We're going nuts over here and don't know what to do. Thanks in advance for any advice (or just condolences ;-)) > > Noel, > > For us acyclovir did not work as well as famvir or Valtrex and it needed to > be given more often which made it difficult. Maybe it didn't work as well > because it was difficult for me to get him to take it five times a day. Not > sure > > Marcia > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2009 Report Share Posted May 26, 2009 I tried posting this on Sunday but it never showed up ... here goes again. We switched our son from Famvir to Acyclovir on April 22. We had two weeks of bliss (clear, bright, verbal, well-mannered) before he slipped into horrible behavior. Dr. G said it's not die-off because that would have happened right away instead of starting two weeks after the switch. But we've done nothing else differently with our son, who is almost 3. No diet change or anything. The upside is that Lucas is still verbal and sharp. It's awesome. The downside is that his stimming like crazy, has a hard time falling asleep at night, and throws a tantrum at the slightest upset. He also seems like he's exploding with energy. Has anyone else experienced this before? Thanks, > > Noel, > > For us acyclovir did not work as well as famvir or Valtrex and it needed to > be given more often which made it difficult. Maybe it didn't work as well > because it was difficult for me to get him to take it five times a day. Not > sure > > Marcia > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2009 Report Share Posted May 29, 2009 , The only delay in medicine-behavior issues I've personally seen is with a build-up on an increase with a SSRI dose- my son's behavior regresses about 3-4 weeks later, after a slight improvement. But I think that since the first two weeks on Acyclovir were GREAT that there wasn't an immediate die-off... but maybe his body was happy to be off the other medicine (I know, I'm so NOT medical!) and slacked off on the fight and then the body had to restart the viral battle, delaying the die-off... ? What part of MS are you in, or you central-northern? I'm in Mobile, AL and we haven't had major allergy issues in the past month, but your son might be reacting to an unknown pollen. Especially since it's your first spring on the protocol. You might not have noticed behavioral regressions due to seasonal allergies in a child so young before this year. Are you doing anything for allergies? I'd check with adding an allergy medicine ASAP. If it is an allergy problem you should see improvements within a few days on medication... if not, DEMAND an anti-viral switch (but agree to re-try the Acyclovir in the future, it sooths the sometimes-savage-beast to be willing and leave doors open) so you don't go another week with the destressing behavior issues. I feel your pain! My son has been on Acyclovir for over 1.5 years... and I'm pretty sure we'll be switching this summer because that's a LONG time on one antiviral! But it's been the ONLY medicine (even with the IMGG shots to boost things one year) to get my son's HHV-6 to NORMAL levels and we started with Dr. G in October 2002 when my son was 4 years old (we started the antiv-viral in Nov 2002, because we started with anti-fungal.) But it's a pain to give it 5 times a day, but it is CHEAP- love that! Good luck! E-mail me off list if you'd like to. - in Mobile, AL ______________________________________ " You must write for children in the same way as you do for adults, only better. " -Maxim Gorky (Aleksey Maksimovich Peshkov) " Don't ask who's influenced me. A lion is made up of the lamb he's digested, and I've been reading all my life. " -Giorgos Seferis (Greek Poet) Reality lies beyond the horizon... Wonderwegian www.wonderwegian.blogspot.com Re: Acyclovir Hi all, We've had our son Lucas (who will turn 3 in late August) on Dr. G's protocol since summer of 2008. I read this message board all the time but don't think I've ever posted before. Anyway, this thread sparked my interest because of our present situation. We switched Lucas to Acyclovir on April 22 after first trying Valtrex and then Famvir. The first two weeks after the switch were heaven: Lucas was bright and verbal and started stringing words together for the first time. We also took him to several parks and playgrounds and watched him act in such a typical way that we almost felt like normal parents for once. We had no die-off whatsoever. It was awesome! Then, everything went south. The past three weeks have been horrible. Lucas's behavior has deteriorated so drastically that I feel like we went from having an almost normal kid to a severely autistic child: Screaming fits, stimming like crazy, non-stop body movements, humming, etc. Dr. G said the downturn can't be attributed to the Acyclovir because it would have presented itself in the first couple weeks, which it didn't. But we didn't change ANYTHING else in his diet our routine. We did just travel from Mississippi to L.A. a couple days ago for our annual office visit (worst trip ever due to his behavior) but this stuff started two weeks before the trip. Does anyone have any theories on this, or has anyone experienced a delayed die-off? We're going nuts over here and don't know what to do. Thanks in advance for any advice (or just condolences ;-)) > > Noel, > > For us acyclovir did not work as well as famvir or Valtrex and it needed to > be given more often which made it difficult. Maybe it didn't work as well > because it was difficult for me to get him to take it five times a day. Not > sure > > Marcia > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2009 Report Share Posted May 29, 2009 I am with Dr. G. He is probably coming down with something, a good way to see if it is viral, is when he goes outside see if he blocks the sun or closes his eyes, this always works for us. HTH Sincerely Noel From: emilylecoz <emilylecoz@...> Subject: Re: Acyclovir Date: Sunday, May 24, 2009, 9:32 PM Hi all, We've had our son Lucas (who will turn 3 in late August) on Dr. G's protocol since summer of 2008. I read this message board all the time but don't think I've ever posted before. Anyway, this thread sparked my interest because of our present situation. We switched Lucas to Acyclovir on April 22 after first trying Valtrex and then Famvir. The first two weeks after the switch were heaven: Lucas was bright and verbal and started stringing words together for the first time. We also took him to several parks and playgrounds and watched him act in such a typical way that we almost felt like normal parents for once. We had no die-off whatsoever. It was awesome! Then, everything went south. The past three weeks have been horrible. Lucas's behavior has deteriorated so drastically that I feel like we went from having an almost normal kid to a severely autistic child: Screaming fits, stimming like crazy, non-stop body movements, humming, etc. Dr. G said the downturn can't be attributed to the Acyclovir because it would have presented itself in the first couple weeks, which it didn't. But we didn't change ANYTHING else in his diet our routine. We did just travel from Mississippi to L.A. a couple days ago for our annual office visit (worst trip ever due to his behavior) but this stuff started two weeks before the trip. Does anyone have any theories on this, or has anyone experienced a delayed die-off? We're going nuts over here and don't know what to do. Thanks in advance for any advice (or just condolences ;-)) > > Noel, > > For us acyclovir did not work as well as famvir or Valtrex and it needed to > be given more often which made it difficult. Maybe it didn't work as well > because it was difficult for me to get him to take it five times a day. Not > sure > > Marcia > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Both my son and I are on Acyclovir. The last RX I filled had to be liquid because the pharmacy couldn't get the pills. All the best, Robyn ________________________________ From: Argie Olivo <golivo@...> Sent: Tue, January 26, 2010 9:55:40 AM Subject: Acyclovir Dear Listmates, Have any of you had any luck getting Acyclovir (Zovirax)? My pharmacy keeps telling me it's back ordered and they don't know when they'll receive any. Thanks, Argie Quote Link to comment Share on other sites More sharing options...
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