norcalmom Posted January 20, 2011 Report Posted January 20, 2011 My 11 year old son has pandas. We don't have a positive Lyme dx (yet)..but do have mycoplasma. I'm really concerned about herxing, or swtiching antibiotics setting off another pandas exacerbation. We did the provocation test a few days ago. I didn't see much evidence of herxing when it was going on except that on the Third night of antibiotics he complained of a "ticc-y" headache, and he cried for no reason (not like him)...But something I noted. Today, he woke up with a head tics (he hasn't had tics since got IVIG 5 months ago) and I had to go to school and get him becasue he had a headache (but when quesitoned he said the feeling was hard to describe - he said he's able to fight the tics, they aren't really bad ones but his head feels weird - he said he feels the same as he did the night he cried for no reason). Heres the thing - he took his last antibiotic on Sunday night (then we switched back to his regular antibitoic that the docs don't think is working anymore) - so this is two full days after. Is this herxing? I thin k mycop can casue herxing when it dies off too...I jsut don't know how long it take for that to be evident. Or is he heading into a pandas exacerbation??!! The provocation test was 5 days of heavy duty antibiotics..the first day was a shot, the next 4 days were 3 different antibiotics. Doxy, amox,..can't remember the third one. And by that I mean he 3 different ones every day..it was 13 pills per day. Does herxing after after? I thought it was immediate. Thanks - I'm freaking out and going ot call my doctor, but don't think the test results will be back for another week. I don't know if we should switch antibitoics now, or wait for test results...or what to do. Any advice appreciated.
norcalmom Posted January 20, 2011 Author Report Posted January 20, 2011 I don't think I can bear this process. I just don't think I can willingly give my kids meds that send him into an exacerbation. On that note - is it different from an exacerbation of pandas for your child? Or is it indistinguishable?
Fixit Posted January 20, 2011 Report Posted January 20, 2011 wendy..i just went back to read some of your story. your 10yr son was on 500mg zith bid? how much does he weigh...that seems really high...no wonder the stomach issuses... my 10 almost 11 weighs 82ish...and a normal dose would be 250 and high is 500 daily.... it may take longer but what about 500 instead of 1000mg.... i'm very caustious too, with concerns of cdiff, candidia, etc.. just thinking... i don't think i see much with 250...but when i get to 500..i think he gets better..but i haven't kept him there longer than a week 10 days.....my hope is to have it at 500 for a while and see what kind of results i can get... or is there a reason for that dose...would like to hear
Suzan Posted January 20, 2011 Report Posted January 20, 2011 Our LLMD says to typically wait 3-6 days for the herx. I have found that with us, the herx often starts after only 1 day. Sometimes they are mild and sometimes more intense. I have an almost perpetual cell phone buzz in my head and shoulderblade. Once I was so jumpy and annoyed I felt like I had drank 2 pots of coffee. dd9 will get pain or headaches or feels like she can't stop moving. But after a month, they are much less. She takes flagyl for busting cysts tomorrow and Saturday so things might get stirred up again. We use motrin and benadryl, melatonin and 5-htp to help with the herxing. Oh, also epsom salt baths are really great. We've been lucky so far. It has not been horrible herxing, at least in relation to the fact that we all already have lyme and they have pandas and that pretty much sucks. But we are in a pretty good place right now so I'm not in touch with the nights that I've posted about how horrible everything is. So it DOES get better! Good luck with it all. When do you find out the results?
norcalmom Posted January 20, 2011 Author Report Posted January 20, 2011 Does herx look just like an exacerbation for you kids? My son's pandas exacerbations included - insomnia, nightmares, tics (violent head jerking) compulsion to look directly into the sun, emotional liability, separation anxiety, bed wetting. decline in math &, hand writing, bedwetting, daytime frequent urination, and extreme irritability (rage-y at times)Exacerbations also last approx 6 weeks for him. he's had about 5 total in past 2 years. NONE since IVIG...he's 80% better. So far I've only seen some tics and some random crying - which he just did again. So I'm trying to figure out - is a "herx" for pandas kids, 1 or 2 weeks of smaller tics and irritability, or 6 weeks of fullblown can't go to school, life altering pandas exacerbation? ____________________________________________ Azith - my son has been on it for a year. He weighted 97 when he started, and is about 110 now. 500mg/day. We get the 250mg tabs - and I give him one in morning and one after school or in evening. the full does together upsets his stomache. Also, I give the morning one with food. The other one doesn't seem to matter becuase he probably has something in his stomach at any given point in the day...afterschool snack, 2 hours later dinner, a couple hours after that another snack... Then I give him probiotics before bed so it has uninterupped time in his digestive track. And he often has yogurt for snack at school, so that is a couple hours after his morning does. That's the schedule we finally worked out.
smartyjones Posted January 21, 2011 Report Posted January 21, 2011 Does herx look just like an exacerbation for you kids? unfortunately, i think it can really vary. my ds had a herx-like reaction to an anti-viral. he had classic, textbook contamination OCD that resulted in not eating. he got just enough fluid each day to keep him from an ER visit to hydrate. he'd never had this before. our dr theorizes that this may have manifested sometime in the future if we weren't treating him. his issues are more oppositional defiant and "just right" OCD. his exacerbations have been more 'more of the same' type behaviors. it came on about 2 weeks-ish after the introduction of the med and lasted in extreme about 7 days. although, he had reduced eating for a few days prior and a week or so after. in retrospect, it was so wierd how it happened b/c it came on as if from nowhere and left almost the same. i see now that there were little signs for those 2 weeks that we just didn't recognize. he didn't begin eating again from really anything that we did -- he just became more accepting of food and not worried about the contamination. are you in good touch with your dr or the office? i really needed their reassurance at the time. good luck.
sf_mom Posted January 21, 2011 Report Posted January 21, 2011 (edited) Norcal Mom... I do NOT believe your son is heading towards regression but most likely still herx'ing from antibiotics. Welcome to the world of chronic infection. I have to agree with Smarty. It really varies from child to child. I have experienced all three different types of herx's: a couple have hit within hours, some have started within 48 to 72 hours and some have built up over weeks. Without the antibiotics used for provocation your son (returning to previous antibiotics) will return to his prior baseline and probably fairly rapidly. If he had maintained the dosage for provocation symptoms would have ramped until the body gets ahead of the toxins/'die off'/herx. A couple of things you can do to help is give him benadryl nightly (need to get overall histamines down and he'll be less symptomatic), have him chug a 1/2 cup bentonite clay before bed or motrin as needed. Due to all your previous PANDAS treatments your son's bacterial/toxin load is coming down and he'll probably resolve his herx's fairly rapidly. If the eventual antibiotic protocol is too much, too many headaches, etc. you will have control to back off. Typically, Dr. H builds up antibiotics over time while watching treatment response closely.... He started all my kids with just two combo's antibiotics and eventually moved to anti-virals and a third antibiotic. Each time we have herx'd but each time we've had baseline adjustments upwards too. We are well beyond where I imagined we would be because I always equated 100% with no TICS and no OCD. You will get the hang of it and realize your son is ranging from 75% to 85%, than 80% to 90%, than 85% to 95%, etc. AND believe me... when he suddenly drops from 95% to 90% you'll still worry. EVEN though you know they are going to herx, its still hard to watch but when you see those good days you'll gain confidence. -Wendy Edited January 21, 2011 by SF Mom
Fixit Posted January 21, 2011 Report Posted January 21, 2011 (edited) 1Surf.... i have constant eye now on the gut.....realizing after biaxin and steriod, and ds steep decline..it could be his gut, herx, or other...i never watched the gut before with all the years of off and on abx.... now, even when not on abx..we all do probi's i give sach b or a culturelle with the zith..as it can withstand the zith,.. you don't want to give those 2 when doing diflucan..as some conflict of interest and then you get die off from the probiotics you are using.... then i give more probis after school.... and more before bed to give tummy alot ofhlep....i rotate various strains...to keep a balance...nothing scientifc... ie 2 of this kind now...1 of these and 1 of these...oh i haven't given this one it 2 days lets take 2 or these... ds takes between 50-100billion units a day.... i can only detox with clay on weekends... the parasite blend i am using again helps with detoxs...so give me oportunity to raise abx to 500 while on it...has milk thisle and wasabe..and treats candida.. bid it is 2x's a day tid is 3xs Edited January 21, 2011 by Fixit
philamom Posted January 21, 2011 Report Posted January 21, 2011 1Surf.... i have constant eye now on the gut.....realizing after biaxin and steriod, and ds steep decline..it could be his gut, herx, or other...i never watched the gut before with all the years of off and on abx.... now, even when not on abx..we all do probi's i give sach b or a culturelle with the zith..as it can withstand the zith,.. you don't want to give those 2 when doing doxy..as some conflict of interest and then you get die off from the probiotics you are using.... then i give more probis after school.... and more before bed to give tummy alot ofhlep....i rotate various strains...to keep a balance...nothing scientifc... ie 2 of this kind now...1 of these and 1 of these...oh i haven't given this one it 2 days lets take 2 or these... ds takes between 50-100billion units a day.... i can only detox with clay on weekends... the parasite blend i am using again helps with detoxs...so give me oportunity to raise abx to 500 while on it...has milk thisle and wasabe..and treats candida.. bid it is 2x's a day tid is 3xs fixit- I take florastor/Culturelle while on doxy...just 4 hours apart. Do you feel differently? Isn't there a potential of die-off with any probiotic? Thanks Just want to mention that Milk Thistle should NOT be used if taking Flagyll. I know some are treating with flagyll for the lyme...so thought it deserved being repeated.
Fixit Posted January 21, 2011 Report Posted January 21, 2011 (edited) 1Surf.... i have constant eye now on the gut.....realizing after biaxin and steriod, and ds steep decline..it could be his gut, herx, or other...i never watched the gut before with all the years of off and on abx.... now, even when not on abx..we all do probi's i give sach b or a culturelle with the zith..as it can withstand the zith,.. you don't want to give those 2 when doing diflucan..as some conflict of interest and then you get die off from the probiotics you are using.... then i give more probis after school.... and more before bed to give tummy alot ofhlep....i rotate various strains...to keep a balance...nothing scientifc... ie 2 of this kind now...1 of these and 1 of these...oh i haven't given this one it 2 days lets take 2 or these... ds takes between 50-100billion units a day.... i can only detox with clay on weekends... the parasite blend i am using again helps with detoxs...so give me oportunity to raise abx to 500 while on it...has milk thisle and wasabe..and treats candida.. bid it is 2x's a day tid is 3xs fixit- I take florastor/Culturelle while on doxy...just 4 hours apart. Do you feel differently? Isn't there a potential of die-off with any probiotic? Thanks Just want to mention that Milk Thistle should NOT be used if taking Flagyll. I know some are treating with flagyll for the lyme...so thought it deserved being repeated. Thanks for the reminder on the thistle/flagyll i'm sorry ..i need to edit..its diflucan and sach that are bad mojo ...i don't chance it...when i have to use DIFLUCAN i don't like to give probis with abx either....but during the week, if i don't give something before he leaves for school..it's 9 hours before i can get them too his sytem...and not sure if its another 30 minutes before they, open up..so to speak....i have read several times about those 2 holding up and not so much die off reaction...so i'd rather do that than have his system be naked all that time, as i know he has some gut issues... on the weekends....i do wait 2 hours.. Edited January 21, 2011 by Fixit
philamom Posted January 21, 2011 Report Posted January 21, 2011 1Surf.... i have constant eye now on the gut.....realizing after biaxin and steriod, and ds steep decline..it could be his gut, herx, or other...i never watched the gut before with all the years of off and on abx.... now, even when not on abx..we all do probi's i give sach b or a culturelle with the zith..as it can withstand the zith,.. you don't want to give those 2 when doing diflucan..as some conflict of interest and then you get die off from the probiotics you are using.... then i give more probis after school.... and more before bed to give tummy alot ofhlep....i rotate various strains...to keep a balance...nothing scientifc... ie 2 of this kind now...1 of these and 1 of these...oh i haven't given this one it 2 days lets take 2 or these... ds takes between 50-100billion units a day.... i can only detox with clay on weekends... the parasite blend i am using again helps with detoxs...so give me oportunity to raise abx to 500 while on it...has milk thisle and wasabe..and treats candida.. bid it is 2x's a day tid is 3xs fixit- I take florastor/Culturelle while on doxy...just 4 hours apart. Do you feel differently? Isn't there a potential of die-off with any probiotic? Thanks Just want to mention that Milk Thistle should NOT be used if taking Flagyll. I know some are treating with flagyll for the lyme...so thought it deserved being repeated. Thanks for the reminder on the thistle/flagyll i'm sorry ..i need to edit..its diflucan and sach that are bad mojo ...i don't chance it...when i have to use DIFLUCAN i don't like to give probis with abx either....but during the week, if i don't give something before he leaves for school..it's 9 hours before i can get them too his sytem...and not sure if its another 30 minutes before they, open up..so to speak....i have read several times about those 2 holding up and not so much die off reaction...so i'd rather do that then have his system be naked all that time, as i know he has some gut issues... on the weekends....i do wait 2 hours.. I agree...many times I have to give probiotics (culturelle/florastor) with my daughter's abxs. I like to put a Florastor kids packet in her lunch box...she just rips it open and swallows. Then I give her a big dose of Ther-biotic or Custom P before bedtime, so some of it has to be working. I'm taking the doxy, so I'm able to space my probiotic 4 hours apart.
Fixit Posted January 21, 2011 Report Posted January 21, 2011 the florastar kids packet...does that have to be refridgerated? or you don't sweat it..as it's only a couple hours where do you get those?
philamom Posted January 21, 2011 Report Posted January 21, 2011 the florastar kids packet...does that have to be refridgerated? or you don't sweat it..as it's only a couple hours where do you get those? We purchase it at Rite Aid (behind the pharmacy counter). They always keep a box in stock for us. It doesn't need to be refrigerated. I don't rag on her if she forgets to take it...just hope for the next day. I don't want her to throw it out, lie and tell me she takes it.
MichaelTampa Posted January 21, 2011 Report Posted January 21, 2011 philamom, Do you know what the problem is with flagyl and milk thistle, taking them both? I am currently taking milk thistle and tinidazole (aka tindamax), a cyst buster similar to flagyl I would suppose. I hadn't heard anything about these combinations being a problem.
philamom Posted January 21, 2011 Report Posted January 21, 2011 philamom, Do you know what the problem is with flagyl and milk thistle, taking them both? I am currently taking milk thistle and tinidazole (aka tindamax), a cyst buster similar to flagyl I would suppose. I hadn't heard anything about these combinations being a problem. I can't remember if it was due to the flagyl not being absorbed properly with the milk thistle or if there could potentally be a reaction. I will see if I can find the info again. I remember reading it at canlyme.com or LDASEPA website under drug interactions. It stood out to me, because I was considering the milk thistle for elevated liver enzymes.
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