Guest guest Posted April 27, 2010 Report Share Posted April 27, 2010 A question to anyone that has experienced die off while on acyclovir? Would love to know how this feelsgoing through this? All symptoms ect. Also how long did this last for your children? Dr. G said this could last 2- 3 wks. For us first 3 days good. Today all day happy one minute then a melt down then crying. He is really having a difficult time. Do we count day starting the antiviral or when initial die off started? Thanks Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2010 Report Share Posted April 28, 2010 According to Stan Kurtz's group MB12VALTREX the regression period can last up to 50 days. (If you google Stan Kurtz Valtrex and TACA Now you can read his paper). For my 13 yr old son the regression started about 30 days into using valtrex and went for a good 50 days). Once we added Imunovir he seems to be much happier. We still have lots of rashes.  From: chocolatiluv <chocolatiluv@...> Subject: Die Off Date: Tuesday, April 27, 2010, 11:21 PM  A question to anyone that has experienced die off while on acyclovir? Would love to know how this feelsgoing through this? All symptoms ect. Also how long did this last for your children? Dr. G said this could last 2- 3 wks. For us first 3 days good. Today all day happy one minute then a melt down then crying. He is really having a difficult time. Do we count day starting the antiviral or when initial die off started? Thanks Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2010 Report Share Posted April 28, 2010 > We have been on immunivir for 6 mths he has been on valtrex with DAN 4 yrs ago (no die off)probably not right dosage Its really difficult with a non verbal child. We didn`t see die off with famvir(last antiviral). I read die off for some is giggling autistic like behaviors we would take this any day. We are having huge outburst then crying. Thanks for your reply Carole > > From: chocolatiluv <chocolatiluv@...> > Subject: Die Off > > Date: Tuesday, April 27, 2010, 11:21 PM > > > Â > > > > A question to anyone that has experienced die off while on acyclovir? > Would love to know how this feelsgoing through this? All symptoms ect. Also how long did this last for your children? Dr. G said this could last 2- 3 wks. > For us first 3 days good. Today all day happy one minute then a melt down then crying. He is really having a difficult time. Do we count day starting the antiviral or when initial die off started? > Thanks > Carole > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2010 Report Share Posted April 28, 2010 > > > From: chocolatiluv <chocolatiluv@...> > Subject: Die Off > > Date: Tuesday, April 27, 2010, 11:21 PM > > > Â > > > > A question to anyone that has experienced die off while on acyclovir? > Would love to know how this feelsgoing through this? All symptoms ect. Also how long did this last for your children? Dr. G said this could last 2- 3 wks. > For us first 3 days good. Today all day happy one minute then a melt down then crying. He is really having a difficult time. Do we count day starting the antiviral or when initial die off started? > Thanks > Carole > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2010 Report Share Posted May 24, 2010 Yes, going back to acyclovir hit my son hard. It took a month (maybe more) to get over die-off and he has been on this med before. This time it was worse die-off. We also thought it might be yeast and asked that Dr G change his anti-fungal. He agreed he would if my son didn't soon improve, but asked us to hang on a few more days. He was right and we saw a brighter young man on the other side of this. I understand how hard it is to see them regress. I hope it resolves soon. Dr. G will do whatever it takes to get your grandson back to his best. Keep in close contact with the office.... Best, Ellen From: chocolatiluv@... Date: Mon, 24 May 2010 22:31:20 +0000 Subject: Die Off My grandson has been on Acyclovir April 24 die off started 3 days later it has been 4 wks. really has had a rough time Now were are toward the end of May he is stll having die off. Dr. Goldberg this could last longer than 21 days. He isn`t as irritable now he is happier we are thinking yeast & odd B.M`s sandy color then also greenish color. OCD behavior, last wk.he had a low grade fever (waiting for test) to see results. Question is: Has anyone or your child have die off last this long? I`vw read these antivirals can cause yeast He has been on the same antifungal(diflucin a very long time.Probably needs changed. Thanks Carole _________________________________________________________________ The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. http://www.windowslive.com/campaign/thenewbusy?tile=multiaccount & ocid=PID28326::\ T:WLMTAGL:ON:WL:en-US:WM_HMP:042010_4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2010 Report Share Posted May 24, 2010 > > > Yes, going back to acyclovir hit my son hard. It took a month (maybe more) to get over die-off and he has been on this med before. This time it was worse die-off. We also thought it might be yeast and asked that Dr G change his anti-fungal. He agreed he would if my son didn't soon improve, but asked us to hang on a few more days. He was right and we saw a brighter young man on the other side of this. I understand how hard it is to see them regress. I hope it resolves soon. > Dr. G will do whatever it takes to get your grandson back to his best. Keep in close contact with the office.... > Best, > Ellen > Thanks Ellen How old is your son? My grandson is 11 has been on several antivirals in the past but we never saw die off like this. While he was with DAN on valtrex(I don`t think this DAN dr. knew anything about viruses or the correct dosage wasn`t right. We trust Dr. Golldberg my daughter is close contact with the office through E-Mails & ph. consults. We have seen lots of good while on this protocol We have seen positives we are getting some speech(we get so excited he actually ask to go to a toy store. Also ask to take a bike ride.. He has a b-day coming this little boy never shows any interest in toys. Praying this will work for him. Thanks Carole > > From: chocolatiluv@... > Date: Mon, 24 May 2010 22:31:20 +0000 > Subject: Die Off > > > > > > > > > > > > > > > > > > > > > > > > > > > > > My grandson has been on Acyclovir April 24 die off started 3 days later it has been 4 wks. really has had a rough time Now were are toward the end of May he is stll having die off. Dr. Goldberg this could last longer than 21 days. > > He isn`t as irritable now he is happier we are thinking yeast & odd B.M`s sandy color then also greenish color. OCD behavior, last wk.he had a low grade fever (waiting for test) to see results. > > Question is: Has anyone or your child have die off last this long? > > I`vw read these antivirals can cause yeast He has been on the same antifungal(diflucin a very long time.Probably needs changed. > > Thanks > > Carole > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. > http://www.windowslive.com/campaign/thenewbusy?tile=multiaccount & ocid=PID28326::\ T:WLMTAGL:ON:WL:en-US:WM_HMP:042010_4 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2010 Report Share Posted May 24, 2010 Hi Carole, Yes, our son lasted almost 4 weeks a few years ago, but it was so worth it! God bless, Argie On May 24, 2010, at 3:31 PM, chocolatiluv wrote: > My grandson has been on Acyclovir April 24 die off started 3 days > later it has been 4 wks. really has had a rough time Now were are > toward the end of May he is stll having die off. Dr. Goldberg this > could last longer than 21 days. > He isn`t as irritable now he is happier we are thinking yeast & odd > B.M`s sandy color then also greenish color. OCD behavior, last wk.he > had a low grade fever (waiting for test) to see results. > Question is: Has anyone or your child have die off last this long? > I`vw read these antivirals can cause yeast He has been on the same > antifungal(diflucin a very long time.Probably needs changed. > Thanks > Carole > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2010 Report Share Posted May 25, 2010 My son is 19 and has been a patient for 9 years. His NK cells have finally gone up to 7% after never getting above 2% all these years. With this improvement, we have seen more gains more quickly. I think Bill Klimas mentioned that his son really took off when his NK cells normalized. My son has been " a difficult case " and has not recovered, but he has come so far. There was a point in his life that he didn't care about toys or anything. That sure has changed. He wants everything now! Hang in there with Dr. G. There is no quick fix to this illness, especially when the child is older when beginning the protocol. I plan to keep my son on the protocol and hope that there will be better immune modulators soon. Again, trust Dr. G and stay in close contact with him. Ellen From: chocolatiluv@... Date: Tue, 25 May 2010 00:43:53 +0000 Subject: Re: Die Off > > > Yes, going back to acyclovir hit my son hard. It took a month (maybe more) to get over die-off and he has been on this med before. This time it was worse die-off. We also thought it might be yeast and asked that Dr G change his anti-fungal. He agreed he would if my son didn't soon improve, but asked us to hang on a few more days. He was right and we saw a brighter young man on the other side of this. I understand how hard it is to see them regress. I hope it resolves soon. > Dr. G will do whatever it takes to get your grandson back to his best. Keep in close contact with the office.... > Best, > Ellen > Thanks Ellen How old is your son? My grandson is 11 has been on several antivirals in the past but we never saw die off like this. While he was with DAN on valtrex(I don`t think this DAN dr. knew anything about viruses or the correct dosage wasn`t right. We trust Dr. Golldberg my daughter is close contact with the office through E-Mails & ph. consults. We have seen lots of good while on this protocol We have seen positives we are getting some speech(we get so excited he actually ask to go to a toy store. Also ask to take a bike ride.. He has a b-day coming this little boy never shows any interest in toys. Praying this will work for him. Thanks Carole > > From: chocolatiluv@... > Date: Mon, 24 May 2010 22:31:20 +0000 > Subject: Die Off > > > > > > > > > > > > > > > > > > > > > > > > > > > > > My grandson has been on Acyclovir April 24 die off started 3 days later it has been 4 wks. really has had a rough time Now were are toward the end of May he is stll having die off. Dr. Goldberg this could last longer than 21 days. > > He isn`t as irritable now he is happier we are thinking yeast & odd B.M`s sandy color then also greenish color. OCD behavior, last wk.he had a low grade fever (waiting for test) to see results. > > Question is: Has anyone or your child have die off last this long? > > I`vw read these antivirals can cause yeast He has been on the same antifungal(diflucin a very long time.Probably needs changed. > > Thanks > > Carole > > > > > > > > > > > > > > > > > > > > > __________________________________________________________ > The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. > http://www.windowslive.com/campaign/thenewbusy?tile=multiaccount & ocid=PID28326::\ T:WLMTAGL:ON:WL:en-US:WM_HMP:042010_4 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2010 Report Share Posted May 25, 2010 Can you tell us exactly which products you used that you think finally helped to bring up your sons NK cells? Was it valtrex and Imunovir? > From: Ellen Jordan <e.jordan29@...> > Subject: RE: Re: Die Off > nids > Date: Tuesday, May 25, 2010, 9:00 AM > > My son is 19 and has been a patient for 9 years. His > NK cells have finally gone up to 7% after never getting > above 2% all these years. With this improvement, we > have seen more gains more quickly. I think Bill > Klimas mentioned that his son really took off when his NK > cells normalized. My son has been " a difficult case " > and has not recovered, but he has come so far. There > was a point in his life that he didn't care about toys or > anything. That sure has changed. He wants > everything now! Hang in there with Dr. G. There > is no quick fix to this illness, especially when the child > is older when beginning the protocol. I plan to keep my son > on the protocol and hope that there will be better immune > modulators soon. > > Again, trust Dr. G and stay in close contact with him. > Ellen > > > From: chocolatiluv@... > Date: Tue, 25 May 2010 00:43:53 +0000 > Subject: Re: Die Off > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Yes, going back to acyclovir hit my son hard. It > took a month (maybe more) to get over die-off and he has > been on this med before. This time it was worse > die-off. We also thought it might be yeast > and asked that Dr G change his anti-fungal. He agreed > he would if my son didn't soon improve, but asked us to hang > on a few more days. He was right and we saw a brighter > young man on the other side of this. I understand how hard > it is to see them regress. I hope it resolves > soon. > > > Dr. G will do whatever it takes to get your grandson > back to his best. Keep in close contact with the > office.... > > > Best, > > > Ellen > > > > > Thanks Ellen > > How old is your son? My grandson is 11 has been on > several antivirals in the past but we never saw die off like > this. While he was with DAN on valtrex(I don`t think > this DAN dr. knew anything about viruses or the > correct dosage wasn`t right. > > We trust Dr. Golldberg my daughter is close contact with > the office through E-Mails & ph. consults. We have seen > lots of good while on this protocol We have seen > positives we are getting some speech(we get so excited he > actually ask to go to a toy store. Also ask to take a bike > ride.. He has a b-day coming this little boy never shows any > interest in toys. Praying this will work for him. > > Thanks > > Carole > > > > > > From: chocolatiluv@... > > > Date: Mon, 24 May 2010 22:31:20 +0000 > > > Subject: Die Off > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > My grandson has been on > Acyclovir April 24 die off started 3 days later it has been > 4 wks. really has had a rough time Now were are toward the > end of May he is stll having die off. Dr. Goldberg this > could last longer than 21 days. > > > > > > He isn`t as irritable now he is happier we are > thinking yeast & odd B.M`s sandy color then also > greenish color. OCD behavior, last wk.he had a low > grade fever (waiting for test) to see results. > > > > > > Question is: Has anyone or your child have die > off last this long? > > > > > > I`vw read these antivirals can cause yeast He has been > on the same antifungal(diflucin a very long time.Probably > needs changed. > > > > > > Thanks > > > > > > Carole > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________________ > > > The New Busy is not the too busy. Combine all your > e-mail accounts with Hotmail. > > > http://www.windowslive.com/campaign/thenewbusy?tile=multiaccount & ocid=PID28326::\ T:WLMTAGL:ON:WL:en-US:WM_HMP:042010_4 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2010 Report Share Posted May 25, 2010 Valtrex has never brought my son's viral titers down. That is what Dr. G put him on first. When switched to famvir, his titers greatly improved, but not his NK cells. Eventually, titers began to creep up and he switched him to acyclovir. It helped, but the CMV titer just kept going up. He switched us back to famvir for a while. We were one of the first to add imunovir several years ago. It has helped others a lot quicker than it did my son. I think the acyclovir combined with the imunovir has been the best combo that we have been on lately. This is different for every child. You also have to take into account that he has slowly become a much healthier young man as the total load on his immune system has become better. As this has evolved, he is the " brighter, ready-to-learn " kid Dr. G is striving for. HTH, Ellen From: susan_fund@... Date: Tue, 25 May 2010 08:18:45 -0700 Subject: RE: Re: Die Off Can you tell us exactly which products you used that you think finally helped to bring up your sons NK cells? Was it valtrex and Imunovir? > From: Ellen Jordan <e.jordan29@...> > Subject: RE: Re: Die Off > nids > Date: Tuesday, May 25, 2010, 9:00 AM > > My son is 19 and has been a patient for 9 years. His > NK cells have finally gone up to 7% after never getting > above 2% all these years. With this improvement, we > have seen more gains more quickly. I think Bill > Klimas mentioned that his son really took off when his NK > cells normalized. My son has been " a difficult case " > and has not recovered, but he has come so far. There > was a point in his life that he didn't care about toys or > anything. That sure has changed. He wants > everything now! Hang in there with Dr. G. There > is no quick fix to this illness, especially when the child > is older when beginning the protocol. I plan to keep my son > on the protocol and hope that there will be better immune > modulators soon. > > Again, trust Dr. G and stay in close contact with him. > Ellen > > > From: chocolatiluv@... > Date: Tue, 25 May 2010 00:43:53 +0000 > Subject: Re: Die Off > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Yes, going back to acyclovir hit my son hard. It > took a month (maybe more) to get over die-off and he has > been on this med before. This time it was worse > die-off. We also thought it might be yeast > and asked that Dr G change his anti-fungal. He agreed > he would if my son didn't soon improve, but asked us to hang > on a few more days. He was right and we saw a brighter > young man on the other side of this. I understand how hard > it is to see them regress. I hope it resolves > soon. > > > Dr. G will do whatever it takes to get your grandson > back to his best. Keep in close contact with the > office.... > > > Best, > > > Ellen > > > > > Thanks Ellen > > How old is your son? My grandson is 11 has been on > several antivirals in the past but we never saw die off like > this. While he was with DAN on valtrex(I don`t think > this DAN dr. knew anything about viruses or the > correct dosage wasn`t right. > > We trust Dr. Golldberg my daughter is close contact with > the office through E-Mails & ph. consults. We have seen > lots of good while on this protocol We have seen > positives we are getting some speech(we get so excited he > actually ask to go to a toy store. Also ask to take a bike > ride.. He has a b-day coming this little boy never shows any > interest in toys. Praying this will work for him. > > Thanks > > Carole > > > > > > From: chocolatiluv@... > > > Date: Mon, 24 May 2010 22:31:20 +0000 > > > Subject: Die Off > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > My grandson has been on > Acyclovir April 24 die off started 3 days later it has been > 4 wks. really has had a rough time Now were are toward the > end of May he is stll having die off. Dr. Goldberg this > could last longer than 21 days. > > > > > > He isn`t as irritable now he is happier we are > thinking yeast & odd B.M`s sandy color then also > greenish color. OCD behavior, last wk.he had a low > grade fever (waiting for test) to see results. > > > > > > Question is: Has anyone or your child have die > off last this long? > > > > > > I`vw read these antivirals can cause yeast He has been > on the same antifungal(diflucin a very long time.Probably > needs changed. > > > > > > Thanks > > > > > > Carole > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________________ > > > The New Busy is not the too busy. Combine all your > e-mail accounts with Hotmail. > > > http://www.windowslive.com/campaign/thenewbusy?tile=multiaccount & ocid=PID28326::\ T:WLMTAGL:ON:WL:en-US:WM_HMP:042010_4 > > > > > > Quote Link to comment Share on other sites More sharing options...
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