Guest guest Posted July 3, 2007 Report Share Posted July 3, 2007 both my ltr and my boyfriend suffer from Herpes they are both on Acyclovir which is another name for Valtrex and they both do fine. For some reason I see it on the lower back on both of them. Both of them are HIV+ and so am I but I have not gotten it. Just relax and take the pills you should be ok. FRANKSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2007 Report Share Posted July 4, 2007 Eli- Sorry about the 'outbreak'. You should not have another one now that you are taking prophylaxis for herpes and it shouldn't be a problem for you. Regarding the Valtrex warning: 1. Happily, you have a strong immune system. 2. Valtrex should not be an issue at all with any of your other meds. Just a thought: Acyclovir is the original herpes suppressing compound and is much cheaper than Valtrex. However, you and your Dr. can talk about that if you want to. Take Care, R Elias <vaeagle2@...> wrote: Hello everyone! I have a quick question, this past weekend I had for the first time a herpes outbreak in my anal area! I don't have idea how and when I might have contracted that STD In any case, it was very painful! I thought it was the product of shaving but as the pain and discomfort kept growing I just had to check with my HIV doctor. Anyhow, after doing a culture test, it came back positive for Herpes. My doctor wants to put me on Valtrex 500mg daily in order to keep this thing at bay. But reading about this medication I came across the following information that got me nervous about it: "Most important fact about Valtrex Valtrex should not be used by anyone with a weak immune system, such as those with HIV infection or those who have undergone a bone marrow or kidney transplant. Valtrex can cause serious side effects, including death, in such people." http://www.drugs.com/pdr/valtrex.html So far, I've been able to be undetectable for the last 3 years and my TCells are around 1000 or so and 35-40%. My current regimen includes: Epzicom and Sustiva. I take other medication for asthma (Singulair and Advair). I'm very active. Healthy. Take several vitamins and supplements. Go to the gym 3-4 times a week and for the most part have a "normal" life. So, my question is, has anyone in the group any experience with this medication? Any words of wisdom? Shall I take this medication daily or on a needed basis? Will it affect my immune system to continue to stay strong and healthy? Any issues or concerns that I should be aware of? Thanks so much guys and gals for any words of advice! Much appreciate it and Happy 4th! In Health, Eli Building a website is a piece of cake. Small Business gives you all the tools to get online. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2007 Report Share Posted July 4, 2007 Eli- Sorry about the 'outbreak'. You should not have another one now that you are taking prophylaxis for herpes and it shouldn't be a problem for you. Regarding the Valtrex warning: 1. Happily, you have a strong immune system. 2. Valtrex should not be an issue at all with any of your other meds. Just a thought: Acyclovir is the original herpes suppressing compound and is much cheaper than Valtrex. However, you and your Dr. can talk about that if you want to. Take Care, R Elias <vaeagle2@...> wrote: Hello everyone! I have a quick question, this past weekend I had for the first time a herpes outbreak in my anal area! I don't have idea how and when I might have contracted that STD In any case, it was very painful! I thought it was the product of shaving but as the pain and discomfort kept growing I just had to check with my HIV doctor. Anyhow, after doing a culture test, it came back positive for Herpes. My doctor wants to put me on Valtrex 500mg daily in order to keep this thing at bay. But reading about this medication I came across the following information that got me nervous about it: "Most important fact about Valtrex Valtrex should not be used by anyone with a weak immune system, such as those with HIV infection or those who have undergone a bone marrow or kidney transplant. Valtrex can cause serious side effects, including death, in such people." http://www.drugs.com/pdr/valtrex.html So far, I've been able to be undetectable for the last 3 years and my TCells are around 1000 or so and 35-40%. My current regimen includes: Epzicom and Sustiva. I take other medication for asthma (Singulair and Advair). I'm very active. Healthy. Take several vitamins and supplements. Go to the gym 3-4 times a week and for the most part have a "normal" life. So, my question is, has anyone in the group any experience with this medication? Any words of wisdom? Shall I take this medication daily or on a needed basis? Will it affect my immune system to continue to stay strong and healthy? Any issues or concerns that I should be aware of? Thanks so much guys and gals for any words of advice! Much appreciate it and Happy 4th! In Health, Eli Building a website is a piece of cake. Small Business gives you all the tools to get online. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2007 Report Share Posted July 4, 2007 Somebody has probably already answered this, but just in case not--- Acyclovir is not another name for Valtrex. Acyclovir is brand name Zovirax, and as someone has already pointed out is the original herpes drug. It's much cheaper and available as generic. Valtrex is the brand name for VALACYCLOVIR, and it is a totally different drug from Acyclovir. It's newer and more expensive. If Acyclovir will contain your herpes taken daily, I'd try that first on a maintenance basis, and leave Valtrex to take just in case Acyclovir doesn't work at some future date. Lots of people take Acyclovir daily as preventative. It's easy to take and has no side effects (usually). I've been on it for years, and it works very well. I get no more than about 1 breakout per year, and it's very mild. I would ask your Doc why he/she decided to start you on Valtrex without trying Acyclovir first? > > both my ltr and my boyfriend suffer from Herpes they are both on Acyclovir > which is another name for Valtrex and they both do fine. For some reason I see > it on the lower back on both of them. Both of them are HIV+ and so am I but > I have not gotten it. Just relax and take the pills you should be ok. > FRANK > > > > ************************************** See what's free at http://www.aol.com. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2007 Report Share Posted July 4, 2007 Somebody has probably already answered this, but just in case not--- Acyclovir is not another name for Valtrex. Acyclovir is brand name Zovirax, and as someone has already pointed out is the original herpes drug. It's much cheaper and available as generic. Valtrex is the brand name for VALACYCLOVIR, and it is a totally different drug from Acyclovir. It's newer and more expensive. If Acyclovir will contain your herpes taken daily, I'd try that first on a maintenance basis, and leave Valtrex to take just in case Acyclovir doesn't work at some future date. Lots of people take Acyclovir daily as preventative. It's easy to take and has no side effects (usually). I've been on it for years, and it works very well. I get no more than about 1 breakout per year, and it's very mild. I would ask your Doc why he/she decided to start you on Valtrex without trying Acyclovir first? > > both my ltr and my boyfriend suffer from Herpes they are both on Acyclovir > which is another name for Valtrex and they both do fine. For some reason I see > it on the lower back on both of them. Both of them are HIV+ and so am I but > I have not gotten it. Just relax and take the pills you should be ok. > FRANK > > > > ************************************** See what's free at http://www.aol.com. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 Acyclovir is four times a day and I do believe that Veltrex is once a day. So, there is an advantage. There is also a low incidence of aplastic anemia for HIV-treated folks on certain meds. Check with your physician and/ or the the cliosest Biosrcipt to you. No doctor can keep track of all facts. Sanford Sanford M. Gross, OD, FAAO Associate Professor Illinois College of Optometry 3241 South Michigan Ave Chicago, Illinois 60616 >>> " jim98122x " <jim98122x@...> 07/04/07 12:33 PM >>> Somebody has probably already answered this, but just in case not--- Acyclovir is not another name for Valtrex. Acyclovir is brand name Zovirax, and as someone has already pointed out is the original herpes drug. It's much cheaper and available as generic. Valtrex is the brand name for VALACYCLOVIR, and it is a totally different drug from Acyclovir. It's newer and more expensive. If Acyclovir will contain your herpes taken daily, I'd try that first on a maintenance basis, and leave Valtrex to take just in case Acyclovir doesn't work at some future date. Lots of people take Acyclovir daily as preventative. It's easy to take and has no side effects (usually). I've been on it for years, and it works very well. I get no more than about 1 breakout per year, and it's very mild. I would ask your Doc why he/she decided to start you on Valtrex without trying Acyclovir first? > > both my ltr and my boyfriend suffer from Herpes they are both on Acyclovir > which is another name for Valtrex and they both do fine. For some reason I see > it on the lower back on both of them. Both of them are HIV+ and so am I but > I have not gotten it. Just relax and take the pills you should be ok. > FRANK > > > > ************************************** See what's free at http://www.aol.com. > BEGIN:VCARD VERSION:2.1 X-GWTYPE:USER FN:Sanford Gross TEL;WORK:x7314 ORG:;Primary Care EMAIL;WORK;PREF;NGW:SGross@... N:Gross;Sanford END:VCARD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 Acyclovir is four times a day and I do believe that Veltrex is once a day. So, there is an advantage. There is also a low incidence of aplastic anemia for HIV-treated folks on certain meds. Check with your physician and/ or the the cliosest Biosrcipt to you. No doctor can keep track of all facts. Sanford Sanford M. Gross, OD, FAAO Associate Professor Illinois College of Optometry 3241 South Michigan Ave Chicago, Illinois 60616 >>> " jim98122x " <jim98122x@...> 07/04/07 12:33 PM >>> Somebody has probably already answered this, but just in case not--- Acyclovir is not another name for Valtrex. Acyclovir is brand name Zovirax, and as someone has already pointed out is the original herpes drug. It's much cheaper and available as generic. Valtrex is the brand name for VALACYCLOVIR, and it is a totally different drug from Acyclovir. It's newer and more expensive. If Acyclovir will contain your herpes taken daily, I'd try that first on a maintenance basis, and leave Valtrex to take just in case Acyclovir doesn't work at some future date. Lots of people take Acyclovir daily as preventative. It's easy to take and has no side effects (usually). I've been on it for years, and it works very well. I get no more than about 1 breakout per year, and it's very mild. I would ask your Doc why he/she decided to start you on Valtrex without trying Acyclovir first? > > both my ltr and my boyfriend suffer from Herpes they are both on Acyclovir > which is another name for Valtrex and they both do fine. For some reason I see > it on the lower back on both of them. Both of them are HIV+ and so am I but > I have not gotten it. Just relax and take the pills you should be ok. > FRANK > > > > ************************************** See what's free at http://www.aol.com. > BEGIN:VCARD VERSION:2.1 X-GWTYPE:USER FN:Sanford Gross TEL;WORK:x7314 ORG:;Primary Care EMAIL;WORK;PREF;NGW:SGross@... N:Gross;Sanford END:VCARD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 This is what I know: The usual dose of Valtrex for a person with normal immune response is 500 mg a day. The dose for a person with a compromised immune system such as in HIV is 500 mg twice a day, which is what I'm taking as I had had two outbreaks of shingles (the first when I had just turned 40 - I'll be 50 in November) and was having recurrent genital herpes. Valtrex quickly breaks down into acyclovir once it's in your system, the advantage of valtrex being not having to taking valtrex as frequently as you would have to take acyclovir. MY concern is that I had a nasty outbreak of genital herpes last month even though I've been on valtrex for quite some time. I'm worried (MORE stress, just what someone with herpes needs) that valtrex may have lost its effectiveness over time with me OR that my counts may have dropped even lower than they had been. I'll get answers to both questions when I see my doctor (Dr. Loftus!) next week. I have had some additional stress in my life of late so I'm hoping that the outbreak can be attributed to that alone. Stress, man, it's a killer. Good luck. + Joe Sieger, R.N. P.S. A physician's assistant scolded me years ago about shaving anywhere in the perianal/genital area as any shaving abrades the skin (whether you can see or feel the abrasion or not) and abraded skin is more susceptible to any type of infection it gets exposed to. I haven't shaved " down there " since. If you feel a real urge to trim, you can use hair clippers with the shortest guide attached. Much safer in the long run. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 After having had anal herpes outbreaks a few times, I recognize the warning signs when an outbreak is about to occur or is just beginning to occur. My proctologist prescribed Valtrex 1 gm caplet qd for 5 days, but catching my herpes soon enough usually stops it after only 1 or 2 days of Valtrex. The trick is to catch the herpes early enough before a full scale outbreak happens. Joe ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 After having had anal herpes outbreaks a few times, I recognize the warning signs when an outbreak is about to occur or is just beginning to occur. My proctologist prescribed Valtrex 1 gm caplet qd for 5 days, but catching my herpes soon enough usually stops it after only 1 or 2 days of Valtrex. The trick is to catch the herpes early enough before a full scale outbreak happens. Joe ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 My LTR takes acyclovir 2 x a day the dosage is 400 mg FRANKSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 My LTR takes acyclovir 2 x a day the dosage is 400 mg FRANKSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2008 Report Share Posted May 31, 2008 We are new to the group and just saw Dr. Goldberg for the first time last Wed. May 28th. We are running into trouble getting our son to swallow the crushed up Valtrex. We have tried every trick we can think of and have resorted to giving it to him while he sleeps. Can this drug be compounded into a liquid form so it can go down easier? Can it be given by injection? Also, although it is only day three we are not seeing die off yet. He is maybe a little tired but there is no irritability. Did anyone have a similar situation where they did not experience the die off reaction. If so how did you know Valtrex was killing the virus? Will the blood work indicate this? Thanks so much. Martha Wood __________________________________ Wood joelkwood@... <mailto:jkwood@...> 901-415-6236 (h) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2008 Report Share Posted May 31, 2008 Yes, blood work does show a lowering of viral titers. & nbsp; It worked very well for my son. From: K. Wood & lt;joelkwood@... & gt; Subject: Valtrex question Date: Saturday, May 31, 2008, 3:55 PM We are new to the group and just saw Dr. Goldberg for the first time last Wed. May 28th. We are running into trouble getting our son to swallow the crushed up Valtrex. We have tried every trick we can think of and have resorted to giving it to him while he sleeps. Can this drug be compounded into a liquid form so it can go down easier? Can it be given by injection? Also, although it is only day three we are not seeing die off yet. He is maybe a little tired but there is no irritability. Did anyone have a similar situation where they did not experience the die off reaction. If so how did you know Valtrex was killing the virus? Will the blood work indicate this? Thanks so much. Martha Wood ____________ _________ _________ ____ Wood joelkwoodcomcast (DOT) net & lt;mailto:jkwoodmidsouth (DOT) rr.com & gt; 901-415-6236 (h) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2008 Report Share Posted May 31, 2008 Give it time, you may see die off next week. No, not everyone sees die off but it's too early for you to know right now. Titers will tell you what is happening if you aren't seeing anything positive or negative. Also, understand that antivirals don't " kill " a virus, they inhibit replication of the virus allowing the immune system to " catch up " on it. Cheryl On May 31, 2008, at 1:55 PM, K. Wood wrote: > We are new to the group and just saw Dr. Goldberg for the first > time last > Wed. May 28th. We are running into trouble getting our son to > swallow the > crushed up Valtrex. We have tried every trick we can think of and have > resorted to giving it to him while he sleeps. Can this drug be > compounded > into a liquid form so it can go down easier? Can it be given by > injection? > > Also, although it is only day three we are not seeing die off yet. > He is > maybe a little tired but there is no irritability. Did anyone have > a similar > situation where they did not experience the die off reaction. If so > how did > you know Valtrex was killing the virus? Will the blood work > indicate this? > > Thanks so much. > Martha Wood > > __________________________________ > > Wood > joelkwood@... <mailto:jkwood@...> > 901-415-6236 (h) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2008 Report Share Posted May 31, 2008 This is so very helpful. Thank you for easing my mind. Martha _____ From: [mailto: ] On Behalf Of Cheryl Lowrance Sent: Saturday, May 31, 2008 8:14 PM Subject: Re: Valtrex question Give it time, you may see die off next week. No, not everyone sees die off but it's too early for you to know right now. Titers will tell you what is happening if you aren't seeing anything positive or negative. Also, understand that antivirals don't " kill " a virus, they inhibit replication of the virus allowing the immune system to " catch up " on it. Cheryl On May 31, 2008, at 1:55 PM, K. Wood wrote: > We are new to the group and just saw Dr. Goldberg for the first > time last > Wed. May 28th. We are running into trouble getting our son to > swallow the > crushed up Valtrex. We have tried every trick we can think of and have > resorted to giving it to him while he sleeps. Can this drug be > compounded > into a liquid form so it can go down easier? Can it be given by > injection? > > Also, although it is only day three we are not seeing die off yet. > He is > maybe a little tired but there is no irritability. Did anyone have > a similar > situation where they did not experience the die off reaction. If so > how did > you know Valtrex was killing the virus? Will the blood work > indicate this? > > Thanks so much. > Martha Wood > > __________________________________ > > Wood > joelkwoodcomcast (DOT) <mailto:joelkwood%40comcast.net> net <mailto:jkwoodmidsouth (DOT) <mailto:jkwood%40midsouth.rr.com> rr.com> > 901-415-6236 (h) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 My son hated Valtrex, and I don't know how much ever really went down! My hubby spent a weekend with him working with him on swallowing pills. In the long run it has been wonderful him being able to swallow pills. I put everything he takes in a clear gel cap, there is no taste at all. > > We are new to the group and just saw Dr. Goldberg for the first time last > Wed. May 28th. We are running into trouble getting our son to swallow the > crushed up Valtrex. We have tried every trick we can think of and have > resorted to giving it to him while he sleeps. Can this drug be compounded > into a liquid form so it can go down easier? Can it be given by injection? > > Also, although it is only day three we are not seeing die off yet. He is > maybe a little tired but there is no irritability. Did anyone have a similar > situation where they did not experience the die off reaction. If so how did > you know Valtrex was killing the virus? Will the blood work indicate this? > > Thanks so much. > Martha Wood > > __________________________________ > > Wood > joelkwood@... <mailto:jkwood@...> > 901-415-6236 (h) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 Yeah, the compounded stuff tastes pretty bad, too. I think my son just got tired of having it and one day I ran out of compound and thought I'd try giving him pills before I crushed them all. He swallowed like a champ in only 2 tries! It's been wonderful ever since. Cheryl On Jun 1, 2008, at 4:25 AM, meljackmom wrote: > My son hated Valtrex, and I don't know how much ever really went > down! My hubby spent a weekend with him working with him on > swallowing pills. In the long run it has been wonderful him being > able to swallow pills. I put everything he takes in a clear gel cap, > there is no taste at all. > > > > > > > > We are new to the group and just saw Dr. Goldberg for the first > time last > > Wed. May 28th. We are running into trouble getting our son to > swallow the > > crushed up Valtrex. We have tried every trick we can think of and > have > > resorted to giving it to him while he sleeps. Can this drug be > compounded > > into a liquid form so it can go down easier? Can it be given by > injection? > > > > Also, although it is only day three we are not seeing die off yet. > He is > > maybe a little tired but there is no irritability. Did anyone have > a similar > > situation where they did not experience the die off reaction. If so > how did > > you know Valtrex was killing the virus? Will the blood work > indicate this? > > > > Thanks so much. > > Martha Wood > > > > __________________________________ > > > > Wood > > joelkwood@... <mailto:jkwood@...> > > 901-415-6236 (h) > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 Noah wouldn't take any pill or supplement mixed in with anything. We bought the Oraflo pill cup and practiced swallowing tic tacs (for every one he swallowed he got to chew one). Now he swallows any pill not matter how large. We have to watch him when he takes his pills because he'll stuff all of the them in his mouth at once if we let him. Although the Oraflo pill cup helped him learn how to swallow pills, it was by no means a magic bullet. The driving force for Noah was knowing that yucky pill tastes were not lingering in his food. I explained to him that he had a choice--swallow the pill or I'd mix it in with something. He very quickly learned to swallow. Good luck, Robyn Cheryl Lowrance <c.lowrance@...> wrote: Yeah, the compounded stuff tastes pretty bad, too. I think my son just got tired of having it and one day I ran out of compound and thought I'd try giving him pills before I crushed them all. He swallowed like a champ in only 2 tries! It's been wonderful ever since. Cheryl On Jun 1, 2008, at 4:25 AM, meljackmom wrote: > My son hated Valtrex, and I don't know how much ever really went > down! My hubby spent a weekend with him working with him on > swallowing pills. In the long run it has been wonderful him being > able to swallow pills. I put everything he takes in a clear gel cap, > there is no taste at all. > > > > > > > > We are new to the group and just saw Dr. Goldberg for the first > time last > > Wed. May 28th. We are running into trouble getting our son to > swallow the > > crushed up Valtrex. We have tried every trick we can think of and > have > > resorted to giving it to him while he sleeps. Can this drug be > compounded > > into a liquid form so it can go down easier? Can it be given by > injection? > > > > Also, although it is only day three we are not seeing die off yet. > He is > > maybe a little tired but there is no irritability. Did anyone have > a similar > > situation where they did not experience the die off reaction. If so > how did > > you know Valtrex was killing the virus? Will the blood work > indicate this? > > > > Thanks so much. > > Martha Wood > > > > __________________________________ > > > > Wood > > joelkwood@... <mailto:jkwood@...> > > 901-415-6236 (h) > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 Martha, This is how I got my son to take meds. I would mix the crushed medicine in Mocha Mix non-dairy ice cream or sorbet and put it on a teaspoon. (The Mocha Mix Ice Cream is in with the other ice creams at stores here.) Then I would give it to my son and follow it with a water chaser. Frozen foods tend to make your taste buds not as sensitive. When he was older this is how I taught him to take pills. I would cut the pills into small pieces and surround them in the ice cream and put them on a spoon. Once again follow it with a water chaser. Eventually when he was ready, we eliminated the ice cream. Hope this helps! Marcia Hinds - E-Mail hindssite@... ( Phone 805 497-8202 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 Thank you so very much, for all the information. I already feel less anxious. Martha _____ From: [mailto: ] On Behalf Of Sent: Sunday, June 01, 2008 5:21 PM Subject: Re: Valtrex question Hi Martha My kid struggled against it at first as well. I remember being rather panicked about it too, and we literally had to pin him down the first couple of weeks - miserable. He was two, and we had crushed it, mixed it w/ cold rice milk (I think Dr G is allowing rice milk less often now), and would squirt the med in his mouth. It was one of those syringes that you could get the little point in no matter how hard they clamped their mouth shut . He eventually got used to it, accepted it, and the struggle was over. I would reward it w/a tiny candy treat (like one white Smartie or frozen rice dream ice cream, etc) to get the taste out of his mouth after washing it down. About a year later, I was taking my pills while the kids stood there watching, and my oldest asked what I was doing (he had improved very much on the meds by this time), and I told them I was putting the pills straight into my tummy by swallowing them, and that one day, they would be able to swallow them too, and then they won't have to taste that yucky yucky medicine. So my son (about to be 4, I think) picked up his pill (I was just about to crush it) and promptly swallowed it, and smiled. I flipped out, screached with joy, literally jumping up and down laughing and applauding, and his little brother, who was two, picked his up and swallowed it too. Since then, they always swallow their pills. I wrap them in margarine after they're washed to keep the taste from getting in their mouth (they were always real sensitive to the blue dye). I've heard some people compound it and not have success, a few have gotten away with it. I've heard one kid pops the pill in his mouth and chews it like it was candy w/no problem (gasp! lol)! My kids never displayed what I can say was die off. They would respond immediately to a med. No die-off w/Diflucan (which we started first) - just shocking dramatic improvements in 3 days (not as common). Antivirals are the " slow working " medicine, and you may see nothing at all initially, but it really doesn't mean it's not doing your child incredible good. I saw some improvement in the first couple of weeks, but very subtle in the beginning. They just seemed brighter and more energetic. The antivirals do their best work over months. However, some people see problems begin to resolve quite quickly - I've heard of hypotonia (very poor muscle tone) turn around and improve in a very short time. Dr Goldberg will be monitoring labs. Titers weren't helpful to us - they were negative. They had HHV6 (we think for a lot of reasons) that was " in hiding " according to a pattern that Dr G looks for. So a lot of different markers within the labs can indicate if a med is helpful. One day I noticed my oldest son suddenly (2 1/2 yrs into treatment) had a neat change in his eye contact - which had already been really good for a time, but suddenly I noticed his eyes " leading " his head - instead of turning his head & then focusing on what he was looking at, his eyes " went first " ... it was really cool to see and I had not noticed it didn't happen (or that it happened w/normal people) until it did happen. It went hand in hand w/other things just seeming " great " , and even though we had just run HHV6 titers shortly before, I asked Dr G to run them again, and they had gone UP from 1:10 to 1:360, and it was the first time we had any way to show that his immune system was responding to HHV6. His brother never had titers manifest - his first HHV6 was 1:10, then dropped off to negative. He really improved on the protocol (he started at 18months old, and he wasn't ASD but he was ill and his labs were a lot worse than his ASD brother), and Natural Killer cells came up well, but when he was off the protocol for 9 - 12 months, he fell back into a Chronic Fatigue spell and was sick for 8 months last year. He got better immediately after spiking a 106.9 fever one night - then was better and almost back to normal within 2 weeks. HHV6 is associated with rapid rising high fevers and febrile seizures (he wasn't having seizures - at 106.9 fever, he looked better than he had in months and months, and that is brain- melting high). I really think there is a difference in the fact that his brother developed titers and has never regressed off the protocol, but he did not, and once again, he is falling ill again. This time, I will have him put on the protcol as soon as I'm able. Sorry - that was a lot more info than you were asking for! lol I just start remembering things.... There is just no straight short answer or one way to see improvements when it comes to . HTH- Valtrex question We are new to the group and just saw Dr. Goldberg for the first time last Wed. May 28th. We are running into trouble getting our son to swallow the crushed up Valtrex. We have tried every trick we can think of and have resorted to giving it to him while he sleeps. Can this drug be compounded into a liquid form so it can go down easier? Can it be given by injection? Also, although it is only day three we are not seeing die off yet. He is maybe a little tired but there is no irritability. Did anyone have a similar situation where they did not experience the die off reaction. If so how did you know Valtrex was killing the virus? Will the blood work indicate this? Thanks so much. Martha Wood ____________ _________ _________ ____ Wood joelkwoodcomcast (DOT) net <mailto:jkwoodmidsouth (DOT) rr.com> 901-415-6236 (h) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Thanks again I will be starting jake on diflucan next week. Dr agrees that yeast is causing alot of problems for Jake. I'm sorry to hear you still deal with PANDAS smptoms. I can only imagine because i see what it does to Jake. How old are your boys? How old were they when on the protocol? It sounds like your eldest has done really well. I hope to hear you're feeling well soon too. Vicki From: & lt;thecolemans4@... & gt; Subject: Re: Valtrex question Date: Monday, June 2, 2008, 6:40 PM Hi Vicki - Re length of antivirals, I used to be under the impression from chats w/Dr Goldberg that you really need a two year committment to the antivirals. & nbsp; Of course, some kids are on it much longer, and my youngest son definitely needed them longer than my older son. & nbsp; They were both on the protocol 2 & amp; 2/3 years, but I had a severe PANDAS flare (docs wouldn't treat my chronic strep for 6 MONTHS because they labeled me a carrier and wouldn't draw ASOs - I had to go to a doc-in-the-box to get the right labs done to show I was sick). & nbsp; With the PANDAS flare so bad, I had to quit work and couldn't afford the protocol. & nbsp; My oldest had done well and Dr G was going to try pulling him off over the next 6 months if all still looked great, but he didn't have the same confidence w/my youngest - and he was right. & nbsp; I don't know if my oldest would benefit now or not... his evaluation last month diagnosed him Asperger syndrome (although it is quite mild I think), whereas 3 years ago, his tests (not a full eval) showed severe autism. & nbsp; Now, even off meds, he continues to get better, but I do think in the next couple of years (after I get treated), I'll get him back on the protocol and see if I think it helps any more. & nbsp; I know Diflucan still helps him, so why wouldn't antivirals? One thing for you to look forward to: & nbsp; in a couple of years, if all goes like it did for us, strep won't have such a significant impact. & nbsp; In the first year, every illness will seem like a setback, but as the time on the antivirals continues, you'll see better and more rapid recoveries from illness. & nbsp; My kids both got OCD w/ strep exactly 3 days prior to when they would have a positive throat swab - so precise I learned to make the doctor appt 3 days from the onset instead of going in too early. & nbsp; Now, they behave like any normal kid when they get strep - they actually run a fever and get sick instead of just going psycho. & nbsp; I've never been well treated for mine - I look forward to learning what meds can do for me. & nbsp; I know one thing, though. & nbsp; Antibiotics never work on PANDAS as well alone as they do combined w/Diflucan. & nbsp; I can't wait to find out about antivirals. & nbsp; My natural killer cells are 2%, and low NKs are associated w/OCD. & nbsp; Antivirals tend to bring them up (if it goes well) - it did with my boys - so that alone should help w/my PANDAS I'm hoping. & nbsp; Three years into it, it's not that bad, but I know I could feel a lot better than I do when I get my ASO down from 1100. I'd love to hear how the Diflucan goes. & nbsp; THAT was a biggie! & nbsp; It doesn't " heal " alone, but boy did it resolve symptoms for us! & nbsp; Later- Valtrex question We are new to the group and just saw Dr. Goldberg for the first time last Wed. May 28th. We are running into trouble getting our son to swallow the crushed up Valtrex. We have tried every trick we can think of and have resorted to giving it to him while he sleeps. Can this drug be compounded into a liquid form so it can go down easier? Can it be given by injection? Also, although it is only day three we are not seeing die off yet. He is maybe a little tired but there is no irritability. Did anyone have a similar situation where they did not experience the die off reaction. If so how did you know Valtrex was killing the virus? Will the blood work indicate this? Thanks so much. Martha Wood ____________ _________ _________ ____ Wood joelkwoodcomcast (DOT) net & amp;lt;mailto:jkwood@ midsouth. rr.com & amp;gt; 901-415-6236 (h) Quote Link to comment Share on other sites More sharing options...
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