mmiglio Posted May 24, 2015 Report Share Posted May 24, 2015 How long do you give a new abx a try before you determine it's not working? My dd11 was diagnosed with PANDAS 6-7 weeks ago. After a month on Augmentin with only worsening symptoms we started her on zithro six days ago. Her symptoms are worse still. How long do we try the new antibiotic before we say this one isn't going to work? She has progressed from having flare ups once a week to several times a day and couldn't get to school on Friday and I'm doubtful she'll make it on Tuesday. We have finally started to get her to take some advil. Her defiance has made it nearly impossible to this point, so we got two 125 mg tablets in her yesterday and will try for more today. She only weighs 58 lbs. I am desperate for help as I know many of you are/were. I am trying to remain calm. How do you just watch as your child rolls around on the floor screaming that there are spiders on her? And throws everything in sight trying to break something? I want so desperately to drive her to the children's hospital and have them hook her up to some miracle cure but I know there isn't one. Bravo to those of you who are dealing with this all day every day and have been for weeks, months, years. It's only been a few months for us, and I am losing it. Link to comment Share on other sites More sharing options...
emst Posted May 24, 2015 Report Share Posted May 24, 2015 Are you using an anti fungal? Very necessary as die off cases years to flare. Ask Doctor for antu fungal. We use diflucan at 400mg /day. If you cant get your hands on it over holiday weekend try candidase and candex (available at whole foods) start smal dose 3x day.Stay on it once you get the antifungal in place. Consider activated charcoal as well -- away from other supplements. I suggest capsules if you can as it can be messy always away from other things. Charcoal is very gentle and calming, Link to comment Share on other sites More sharing options...
emst Posted May 24, 2015 Report Share Posted May 24, 2015 down the road I would advise not waiting more thane 10 days to determine whether an intervention is working or not /contact the practitioner or ask for help on the message boards Link to comment Share on other sites More sharing options...
mmiglio Posted May 24, 2015 Author Report Share Posted May 24, 2015 She is on Nystatin two tablets twice a day. Trying to get detox in her but she refuses to take it. So four more days on this abx... thanks. Link to comment Share on other sites More sharing options...
rowingmom Posted May 24, 2015 Report Share Posted May 24, 2015 I would ask your doctor if it would be possible to decrease dosage or even discontinue for a while to see if she can detox for a bit. If she improves then you will know that the symptom intensification is due to die-off. If you find no improvement with removal of abx then you know the abx she is taking are not addressing her particular infection. She will need to take probiotics as well. Much of the body's immune system is housed in the gut and the symbionts need to function at full capacity. Antibiotics (and glyphosate as well) will preferentially target beneficial bacteria, leaving only pathogenic forms. mmiglio 1 Link to comment Share on other sites More sharing options...
mmiglio Posted May 24, 2015 Author Report Share Posted May 24, 2015 She is taking probiotics. Only once a day. Trying to get more in her but she refuses almost all medicine. It is a fight so I'm trying to get what is the most important although it's hard to figure out. Thank you to everyone who is helping to keep me sane today. This has been the worst two days so far. I know it's not going to get better fast. One day at a time. One hour at a time. Link to comment Share on other sites More sharing options...
sf_mom Posted May 25, 2015 Report Share Posted May 25, 2015 (edited) Die-off response 'typically' starts within 48 to 72 hours of starting a new antibiotic. For us, an intense die-off period would typically last for at about two weeks. Then I would notice one symptom, sometimes something unexpected get better and intuitively knew the new antibiotic was working in the middle of some obvious symptoms that were far worse that would continued on for sometimes a couple of months. For example: When younger DS started a new combination of antibiotics for Bartonella, he started to rage almost daily. Previous to new antibiotic he would rage but it was infrequent comparatively. At some point during this initial period, I realized I could rationalize with him during these rages when I could not previously (was only able to could keep him safe from harming himself or someone else). Eventually rages were every other day, then every three days, then every week. The weekly rages lasted for almost five months. However, since then he has rarely had a rage. Its now been over two years since he has had anything close to a rage. He is the sweetest kid without any mood issues at all. In our darkest moments with this particular child we were truly worried for his future. Today, he is on a pulsed antibiotic protocol and his only symptom is nightmares/night waking as a die off response. We can predict the nights he'll be up and have nightmares based on his treatment protocol. My hope in sharing our experience is you'll learn to use your intuition and "sometimes" push through in light of the initial worsening of symptoms. Edited May 25, 2015 by sf_mom mmiglio 1 Link to comment Share on other sites More sharing options...
mmiglio Posted May 25, 2015 Author Report Share Posted May 25, 2015 Thank you, SF_Mom. We finally were able to get her herxing under control with some detox. She has steadily been taking Advil which I also think is working and we've worked up to 1.5 mg of inositol a day. I don't think her PANDAS symptoms are any better yet, but we are so grateful for the fact that she is no longer herxing that I'm ok with that for now. We had two days leading into the weekend where I thought I was going to have to have her hospitalized to keep her rage under control. Fortunately it's been 1-1/2 days since the last episode, and her overall mood is so much better, too. Hopefully we'll start to see some improvement of the anxiety, mood swings and OCD this week. I know the inositol is working b/c she is still saying some of the same things that bother her but she isn't responding to them in nearly the same way. Our dr still wants us to treat for barbesia... I've read that there isn't any die off if the infection is just strep. But she is definitely having die off, so I guess now we have to find out what else is causing the infection. Link to comment Share on other sites More sharing options...
rowingmom Posted May 26, 2015 Report Share Posted May 26, 2015 (edited) Our dr still wants us to treat for barbesia... I've read that there isn't any die off if the infection is just strep. But she is definitely having die off, so I guess now we have to find out what else is causing the infection. mmiglio - keep up the good work. You will find an answer. Edited May 27, 2015 by rowingmom Link to comment Share on other sites More sharing options...
mmiglio Posted May 27, 2015 Author Report Share Posted May 27, 2015 Thank you, rowing mom. Unfortunately after 1-1/2 good days with no herxing it has returned, and she only made it to three classes at school today and she is refusing advil again. Link to comment Share on other sites More sharing options...
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