Guest guest Posted January 18, 2012 Report Share Posted January 18, 2012 Hi Kim, yes it really helped and still helps. The reason I think it helped (but I have no possible way of proving it, and I'm not a doc but I checked it with ) is because we are dealing with viral infection of the brain at a chronic level. Long term ibuprofen is not good for people, research saying very long term use contributes to the bacteria which results in ulcers, but to help with these symptoms this worked and still works. I don't plan to use it for months on end, or years, but on an ad-hoc basis because I have to help J not be in distress. Eileen x > > > > > > Hi za, > > Hope Natasa is watching as well. > > > > The first time we did Valtrex, we saw side effects in the first week on day 5. Side effects for us were: head-pressing against us and hard surfaces (like head banging, to relieve inflammation) and stupidly massive yeast. Lots of stimming, lining up, to cope with extra stress on the body. This time, with acyclovir, we haven't had any. All we've seen is great gains. We have learned to a certain extent from the first time. > > > > You might not get any side effects at all but most of us do. > > > > In a nutshell, to avoid the side-effects, i.e. to keep the extra stress on the body in control which might result from anti-viral use, you need to: > > > > Increase your yeast protocol, after observation of first week. > > We upped probiotics at night. We use CP1 and Candex as it doesn't contain Streptococcus Thermophilis which for some reason has negative impact on PANDAS kids. We haven't used as much Candex as we used to, but are working it back in again (remember we totally came off biomed for a while because we hadn't had a break for six years). > > > > You need to manage inflammation - consider Ibuprofen. Not good for kids with gut issues, granted, but you are looking at bigger picture and not long term use. We did Valtrex a few years ago which is six times more bioavailable than Acyclovir. We had massive stimming (we needed prescription yeast killers and at that point had to fight for them because this was all new) and pressing head against surfaces to relieve pain. This time on Acyclovir, we did a week of regular ibuprofen at the beginning of the protocol. Then occasional doses if needed on the odd rough day. This worked for us. We didn't get the head pressing and all the stims. If we had a really bad moment we'd put it in again, but not regularly. Also you could up the fish oils. That helps as well. You could also up fish oil protocol, that has helped here. > > > > Manage the strep. Another thing is we have got J on Zithro at the same time as the anti-viral. This won't make it necessarily what DG will prescribe for Eddie because we had massive strep titres. It depends. But Zithro has an overall anti-inflammatory effect on the body. So this begs question, did J avoid side-effects this time because of Zithro or Ibuprofen, because he was on both? I think Ibuprofen helps because when he was on Zithro alone for strep, he still had inflammation so we needed something extra, particularly at the start. It is not something I want long term, but it is helping right now, along with the rest of the world I'm looking for more healthy ways. > > > > Getting the strep/tics under control before you start antivirals seems to have helped this time. We didn't know strep was rampant the first time we did Valtrex. > > > > To me, if you have viral and strep at same time, you are going to battle inflammation and if you can do that you are on a winner. Its so much better for us this time. Whatever you do, don't suddenly stop the anti-virals but I guess has told you that. > > > > Liver and Kidney Support. Essential to clear systemic prescription drugs through the system (and viruses). I use Liv-detox but am considering moving to other supps. > > > > Methylation. You need to make sure the MB12/folinic is in place, but if the negative effects are too much at the start, I would do that week 2/3 if not established already or you won't know what's causing what. > > > > Managing coming off anti-virals eventually - up your strep protocol. When viruses move out we have found in comes Strep. > > > > Isobel Ramsey gave me a tip about massaging encense oil (in a carrier) into the feet at night, this and some music helps calm as well, so think about what calms Eddie as well as supps to avoid the storm. > > > > If things get really awful, pick up the phone to 's sec , and he will get back to you usually by the end of the day if its an emergency. > > > > Have you got some Melatonin to help with the sleep, is Eddie all right on that? > > > > Please ask if I've been unclear and you want me to answer anything in more details. > > > > Much love to you and Eddie > > Things have got so much better in all areas here having braved this one out for a while. > > > > Eil x > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2012 Report Share Posted January 18, 2012 Sorry Kim. Meant to say. I dose the orange flavoured Nurofen, which has less additives than the strawberry one, at the dose according to weight. So it depends how big your little one is. First five days I do three times a day. Then when things get rough I will put in the odd dose. I have to add there may be better ways of getting through this, hope someone has some out there! But like I said in the original reply, I'm looking at the bigger picture. Eil x > > > > > > > > > Hi za, > > > Hope Natasa is watching as well. > > > > > > The first time we did Valtrex, we saw side effects in the first week on day 5. Side effects for us were: head-pressing against us and hard surfaces (like head banging, to relieve inflammation) and stupidly massive yeast. Lots of stimming, lining up, to cope with extra stress on the body. This time, with acyclovir, we haven't had any. All we've seen is great gains. We have learned to a certain extent from the first time. > > > > > > You might not get any side effects at all but most of us do. > > > > > > In a nutshell, to avoid the side-effects, i.e. to keep the extra stress on the body in control which might result from anti-viral use, you need to: > > > > > > Increase your yeast protocol, after observation of first week. > > > We upped probiotics at night. We use CP1 and Candex as it doesn't contain Streptococcus Thermophilis which for some reason has negative impact on PANDAS kids. We haven't used as much Candex as we used to, but are working it back in again (remember we totally came off biomed for a while because we hadn't had a break for six years). > > > > > > You need to manage inflammation - consider Ibuprofen. Not good for kids with gut issues, granted, but you are looking at bigger picture and not long term use. We did Valtrex a few years ago which is six times more bioavailable than Acyclovir. We had massive stimming (we needed prescription yeast killers and at that point had to fight for them because this was all new) and pressing head against surfaces to relieve pain. This time on Acyclovir, we did a week of regular ibuprofen at the beginning of the protocol. Then occasional doses if needed on the odd rough day. This worked for us. We didn't get the head pressing and all the stims. If we had a really bad moment we'd put it in again, but not regularly. Also you could up the fish oils. That helps as well. You could also up fish oil protocol, that has helped here. > > > > > > Manage the strep. Another thing is we have got J on Zithro at the same time as the anti-viral. This won't make it necessarily what DG will prescribe for Eddie because we had massive strep titres. It depends. But Zithro has an overall anti-inflammatory effect on the body. So this begs question, did J avoid side-effects this time because of Zithro or Ibuprofen, because he was on both? I think Ibuprofen helps because when he was on Zithro alone for strep, he still had inflammation so we needed something extra, particularly at the start. It is not something I want long term, but it is helping right now, along with the rest of the world I'm looking for more healthy ways. > > > > > > Getting the strep/tics under control before you start antivirals seems to have helped this time. We didn't know strep was rampant the first time we did Valtrex. > > > > > > To me, if you have viral and strep at same time, you are going to battle inflammation and if you can do that you are on a winner. Its so much better for us this time. Whatever you do, don't suddenly stop the anti-virals but I guess has told you that. > > > > > > Liver and Kidney Support. Essential to clear systemic prescription drugs through the system (and viruses). I use Liv-detox but am considering moving to other supps. > > > > > > Methylation. You need to make sure the MB12/folinic is in place, but if the negative effects are too much at the start, I would do that week 2/3 if not established already or you won't know what's causing what. > > > > > > Managing coming off anti-virals eventually - up your strep protocol. When viruses move out we have found in comes Strep. > > > > > > Isobel Ramsey gave me a tip about massaging encense oil (in a carrier) into the feet at night, this and some music helps calm as well, so think about what calms Eddie as well as supps to avoid the storm. > > > > > > If things get really awful, pick up the phone to 's sec , and he will get back to you usually by the end of the day if its an emergency. > > > > > > Have you got some Melatonin to help with the sleep, is Eddie all right on that? > > > > > > Please ask if I've been unclear and you want me to answer anything in more details. > > > > > > Much love to you and Eddie > > > Things have got so much better in all areas here having braved this one out for a while. > > > > > > Eil x > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2012 Report Share Posted January 18, 2012 hi eileen i'm really glad you posted the info about ibruprofen, poor eddie was in a real state last night, so i gave him some. we had only taken 4 x 800mg aciclovir yesterday, first day, and he was crying (very unlike him), rocking back and forth and holding his head, then running back and forth shouting with the crying. i will go in with your week long plan of profen today and keep a close eye on things. as you mentioned multi-strains of probos without strep in, do you have any suggestions other than cp1. most multi-strains have strep in then. i checked out primal defense ultra last night, looks good?! karenza xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2012 Report Share Posted January 18, 2012 thank you kath, please keep us posted to how she's doing, karenza > > HI > > We started aciclovir with my 18 year old dd last Thursday. So far she has had a few more outbursts than usual. She looks pale and isn't in a very good mood. I am guessing she may feel nauseous or have a headache? > > Kath > > Sent from my iPad > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2012 Report Share Posted January 19, 2012 Primal Defense is tricky if your child is sensitive, esp if strep suspected. Imo better go with something with as few strains as possible. Culturelle or something like that?Natasa Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Thu, 19 Jan 2012 06:52:14 -0000To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: aciclovir hi eileen i'm really glad you posted the info about ibruprofen, poor eddie was in a real state last night, so i gave him some. we had only taken 4 x 800mg aciclovir yesterday, first day, and he was crying (very unlike him), rocking back and forth and holding his head, then running back and forth shouting with the crying. i will go in with your week long plan of profen today and keep a close eye on things. as you mentioned multi-strains of probos without strep in, do you have any suggestions other than cp1. most multi-strains have strep in then. i checked out primal defense ultra last night, looks good?! karenza xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2012 Report Share Posted January 21, 2012 eddie's been great on primal defense before, i was looking at the " ultra " version, and i always check it doesn't contain strep therm for eddie, he obviously doesn't do well on that strain. eddie's on 4 different forms of magnesium and plenty of it and high dose krill oil and he drinks loads and loads of filtered water. mb12 once a day (in the evening) and folinic twice a day. we're only on day 4 of aciclovir and since that nasty episode on day 2, he's had increase in ocd and button pushing behavior, hyperactivity moving into new levels and tics/jerks increasing. will speak to dr g on monday morning. karenza > > > > Primal Defense is tricky if your child is sensitive, esp if strep suspected. > > Imo better go with something with as few strains as possible. Culturelle or > > something like that? > > > > Natasa > > > > From: za <bbuyonline@> > > Reply-To: " Autism-Biomedical-Europe " > > <Autism-Biomedical-Europe > > > Date: Thu, 19 Jan 2012 06:52:14 -0000 > > To: " Autism-Biomedical-Europe " > > <Autism-Biomedical-Europe > > > Subject: Re: aciclovir > > > > > > > > > > > > > > hi eileen > > > > i'm really glad you posted the info about ibruprofen, poor eddie was in a > > real state last night, so i gave him some. we had only taken 4 x 800mg > > aciclovir yesterday, first day, and he was crying (very unlike him), rocking > > back and forth and holding his head, then running back and forth shouting > > with the crying. i will go in with your week long plan of profen today and > > keep a close eye on things. > > > > as you mentioned multi-strains of probos without strep in, do you have any > > suggestions other than cp1. most multi-strains have strep in then. i > > checked out primal defense ultra last night, looks good?! > > > > karenza > > xx > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2012 Report Share Posted February 9, 2012 Hi everyone4 weeks into a course of aciclovir dd has gone bonkers.OCD gone through the roof, (was virtually unmanageable before starting the course) Big rise in aggression.Looks pale and unwell asking to go to hospital.Using ibuprofen,activated charcoal.Should I stop the aciclovir or push through.In anyone's experience do these sounds like "positive" effects! Is is safe to stop aciclovir abruptly or should I lower dose? Can't get hold of anyone at B for adviceKathSent from my iPad Yes , that's what we had, it was too much too soon for , the valtrex at the dose we did it. Acyclovir working much better and a heck of a lot less expensive. I understand what you are saying about the CD4+ Natasa, I want an immune panel test to look at things like this, but can't get agreement on it in UK currently. There was a good one we saw in Florida that parents were using. J was sick whilst on aciclovir today, but hasn't been to date, told there was a virus going round school when we brought him home. Am putting more pieces together here, need more evidence. Subject of separate post above, thank you for that excellent bit of info. za I hope Eddie continues to do well. Eileen xx > > > > hi eileen > > > > i'm really glad you posted the info about ibruprofen, poor eddie was in a real state last night, so i gave him some. we had only taken 4 x 800mg aciclovir yesterday, first day, and he was crying (very unlike him), rocking back and forth and holding his head, then running back and forth shouting with the crying. i will go in with your week long plan of profen today and keep a close eye on things. > > > > as you mentioned multi-strains of probos without strep in, do you have any suggestions other than cp1. most multi-strains have strep in then. i checked out primal defense ultra last night, looks good?! > > > > karenza > > xx > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2012 Report Share Posted February 9, 2012 This sounds very serious. I have no experience with this or with Valtrex, sorry. Is there no doctor at the Breakspear who will speak to you today? There really should be. I hope list members with experience of prescription anti-virals reply as soon as possible. I remember at least one person (Mandi?) saying Valtrex caused such awful side -effects it had to be stopped. Can the pharmacy at the Breakspear help you? Margaret > > > > > > > > hi eileen > > > > > > > > i'm really glad you posted the info about ibruprofen, poor eddie was in a real state last night, so i gave him some. we had only taken 4 x 800mg aciclovir yesterday, first day, and he was crying (very unlike him), rocking back and forth and holding his head, then running back and forth shouting with the crying. i will go in with your week long plan of profen today and keep a close eye on things. > > > > > > > > as you mentioned multi-strains of probos without strep in, do you have any suggestions other than cp1. most multi-strains have strep in then. i checked out primal defense ultra last night, looks good?! > > > > > > > > karenza > > > > xx > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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