peglem Posted August 13, 2013 Report Share Posted August 13, 2013 I'd like to hear your experiences with antivirals if you feel like sharing. Link to comment Share on other sites More sharing options...
LNN Posted August 13, 2013 Report Share Posted August 13, 2013 Do you have a particular virus in mind? Not a big area of expertise on my end, but I've gathered that like abx, a particular antiviral must be a good match for a particular virus in order to be effective. My go-to when the kids seem to have some sort of bug is l-lysine, because it's OTC and seems to have a pretty good range of effectiveness on common viruses. But it doesn't work on eveything. We've also used artemisinin a few times, with mixed results. Is this just something you're considering adding into Allie's regimine or do you think she's got something specific going on? Link to comment Share on other sites More sharing options...
T_Anna Posted August 13, 2013 Report Share Posted August 13, 2013 We have used and are back to using Valtrex. We stopped for a month and it seemed to be helping, so we are back on it. We are using it to fight Coxsackie. T.Anna DS15 Link to comment Share on other sites More sharing options...
peglem Posted August 14, 2013 Author Report Share Posted August 14, 2013 Do you have a particular virus in mind? Not a big area of expertise on my end, but I've gathered that like abx, a particular antiviral must be a good match for a particular virus in order to be effective. My go-to when the kids seem to have some sort of bug is l-lysine, because it's OTC and seems to have a pretty good range of effectiveness on common viruses. But it doesn't work on eveything. We've also used artemisinin a few times, with mixed results. Is this just something you're considering adding into Allie's regimine or do you think she's got something specific going on? I think she was prescribed Valtrex- just a 7 day course. Not sure of particular virus-just seems to be something the abx is missing, so thought we'd give it a try if nobody has an absolute horror story with it. She gets IVIG every 3 weeks, so titers measures are unreliable. I really, really, really have to thank you for all the MTHFR info. Have seen huge improvements since treating for MTHFR. Haven't done 23&me yet, but just the MTHFR treatment has drastically reduced fight or flight episodes. In fact, I think she's in a flare right now because of OCD issues and bed wetting. There is some measure of anxiety there....but no fight or flight meltdowns/rages. I can't stop smiling! Link to comment Share on other sites More sharing options...
peglem Posted August 14, 2013 Author Report Share Posted August 14, 2013 We have used and are back to using Valtrex. We stopped for a month and it seemed to be helping, so we are back on it. We are using it to fight Coxsackie. T.Anna DS15 Thank you. Side effects? Did you see obvious improvements or just a decline when it was stopped? I know sometimes I don't realize that something has been helping until I stop it. Link to comment Share on other sites More sharing options...
smartyjones Posted August 14, 2013 Report Share Posted August 14, 2013 peglem - glad to hear you see success with MTHFR -- what mutation does she have? we treat with homeopathy, so likely different than what you are asking. . . but I do believe my ds had significant improvement from treating for viruses. however, I do also believe he had his greatest exacerbation, including significant eating contamination issues, when we treated for one virus. luckily, it was short-lived, but it was extreme. Link to comment Share on other sites More sharing options...
peglem Posted August 14, 2013 Author Report Share Posted August 14, 2013 peglem - glad to hear you see success with MTHFR -- what mutation does she have? we treat with homeopathy, so likely different than what you are asking. . . but I do believe my ds had significant improvement from treating for viruses. however, I do also believe he had his greatest exacerbation, including significant eating contamination issues, when we treated for one virus. luckily, it was short-lived, but it was extreme. She is compound heterozygous for 677 and 12something something- you know which one! Hope Allie doesn't end up freaking from it- her worse is really so unbearable! Link to comment Share on other sites More sharing options...
LNN Posted August 14, 2013 Report Share Posted August 14, 2013 Do you have a particular virus in mind? Not a big area of expertise on my end, but I've gathered that like abx, a particular antiviral must be a good match for a particular virus in order to be effective. My go-to when the kids seem to have some sort of bug is l-lysine, because it's OTC and seems to have a pretty good range of effectiveness on common viruses. But it doesn't work on eveything. We've also used artemisinin a few times, with mixed results. Is this just something you're considering adding into Allie's regimine or do you think she's got something specific going on? I think she was prescribed Valtrex- just a 7 day course. Not sure of particular virus-just seems to be something the abx is missing, so thought we'd give it a try if nobody has an absolute horror story with it. She gets IVIG every 3 weeks, so titers measures are unreliable. I really, really, really have to thank you for all the MTHFR info. Have seen huge improvements since treating for MTHFR. Haven't done 23&me yet, but just the MTHFR treatment has drastically reduced fight or flight episodes. In fact, I think she's in a flare right now because of OCD issues and bed wetting. There is some measure of anxiety there....but no fight or flight meltdowns/rages. I can't stop smiling! So, so glad the MTHFR stuff has helped. You've got me smiling now too! Don't have a vast knowledge of anti-virals/Valtrex. But when abx weren't doing it completely for DD (the one with MTHFR) it turned out to be additional methylation stuff that we were able to address after 23andMe results. So that may give you additional things to work on if/when you do that test. Turned out to be the key for DD and it was something abx couldn't fix. Of course, you kow about yeast too. But thought I'd write it down to add it to the brainstorming list. Link to comment Share on other sites More sharing options...
LaurenK Posted August 14, 2013 Report Share Posted August 14, 2013 Smartyjones did you use engystol for viruses? What did you use homeopathically? Thanks. Link to comment Share on other sites More sharing options...
Mayzoo Posted August 14, 2013 Report Share Posted August 14, 2013 Kiddo is currently on Amantadine 100mg for very high rubella titers. I am considering putting her on low doses of Virastop for high coxsackie, hhv-6 and ebv. I want to try l-lysine as well and not sure which I will try first. The immuno is neither excited or hesitant to try them. He feels nothing touches coxsackie despite anecdotal info saying valtrex works. Link to comment Share on other sites More sharing options...
JuliaFaith Posted August 15, 2013 Report Share Posted August 15, 2013 Viruses were tough to get deactivated for my son. He was on several supplements and prescriptions with no abatement. Valtrex and Valcyte were the last 2 that we tried. Valcyte stopped viruses from replicating and my cost with insurance paying for most of it was $175/month. Last summer when he was done after 4 months of treatment son felt better than he had in 3 yrs. He had a PANS relapse and felt bad again. Now this year, he was on Valcyte for 6 months, and we started gcmaf about 4 months in. He is still doing GCMAF but off Valcyte and feeling better. Will be interesting to see next blood tests. Valtrex did not seem to do anything for him, even after treatment for parasites and bacteria. But it was a good starting point along with supplements and homeopathic tinctures. Link to comment Share on other sites More sharing options...
smartyjones Posted August 20, 2013 Report Share Posted August 20, 2013 Smartyjones did you use engystol for viruses? What did you use homeopathically? Thanks. we used products from a company called celletech. the one for the virus that caused such the reaction was from Professional Complementary Health Formulas Link to comment Share on other sites More sharing options...
trintiybella Posted August 20, 2013 Report Share Posted August 20, 2013 Our test for viruses just showed the word "high". Is there an additional test that shows titers or wether the virus is active or not? Link to comment Share on other sites More sharing options...
peglem Posted August 21, 2013 Author Report Share Posted August 21, 2013 Our test for viruses just showed the word "high". Is there an additional test that shows titers or wether the virus is active or not? Usually they test IgG and IgM titers (antibodies) for each virus. High IgM means the infection is current. High IgG can either mean recent past infection or chronic infection. Some labs just report high or low, while others give specific numbers and a normal reference range. Link to comment Share on other sites More sharing options...
3bmom Posted September 19, 2013 Report Share Posted September 19, 2013 We are on Valacyclovir 1 gram 3x/ day for the last 2years. Started off slowly so he could handle die off. Made a huge difference in 36 hours for us. Would of kept him out of hospital if they would of done blood work. His titers were for herpes simplex 6, 15x higher than normal. At zero now and Dr is thinking about taking him off which scares me since we have had such great success. His Dr. Also tested for Herpes 1 and 2. Just had him tested for cosakie and it was negative. Dr. has seen that whenyou treat the other issues, and allergy and GMO free diet you can kick out other viruses. On a side note my other son at 2 was put on valcyclovir for 5 years after getting multiple cold sores every week. He has dyslexia, Irlen, and dysgraphia. Lost dysgraphia with acutane for horrific acne. Wonder if he would of had Autism if left untreated knowing what I know now. Didn't see any side effects with either boys. Also used for father when we saw signs of Alzheimer's and he tested positive. Great results! JuliaFaith 1 Link to comment Share on other sites More sharing options...
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