Posted 28 February 2011 - 09:26 AM
IVIG #2 occurred Feb 2-3, 2011. 24 days later, this past Saturday, she had a very slight elevation in temp (99.5) and nausea (but no vomit); it lasted about 2 hours, then POOF she's completely fine again and playing softball.
The exact same number of days later????? Pretty freaky, huh? She's doing great, by the way
Posted 28 February 2011 - 05:16 PM
We are in the middle of our 1st IVIG, it is these side effects I think I am most scared off....good to hear you got through them okay.
started biomedical treatments w/DAN! and GF/CF at age 4
Cam K 175, 2 HD IVIG's, 2 LLMD's- had improved, but still challenging in areas at times.
Mom-tested positive Igenex PCR Lyme, and positive Bartonella, 2011.
After long tx break for dd9, where we backslid, in Spring '14 decided to resume tx for Lyme and co-infections,
with LLMD, and finally saw a PANDAS specialist (amazing experience and person)
and as a result, have a wonderful new baseline! (everything crossed!)
Posted 28 February 2011 - 06:30 PM
My son had the migraine, and horrible vomiting. We just switched anitbiotics...and 3 days after antibirotic switch - vomiting. Not normal vomiting, like getting something out of his system (by the way, no one has any stomach bugs) it was exactly like ivig - every hour almost on the hour for 5-6 hours. Also, it occurred 3 days after the ivig. He also had a headache. Neither the vomiting nor the headache were as bad as after ivig. He never gets headaches. And like I said, no one was sick, so REALLY don't think it was a stomache bug.
I'm now convinced it is a herx - a die off off of certain bacteria that produce toxins when they die - not a reaction to the ivig. My son has mycoplasma, which, like lyme disease, is known to cause herxing during treatment. since about 15%(?) of pandas kids get this reaction, I wonder if these are kids with underlying infections that produce herx response. Its actaully a good sign (killing the stuff off) but ivig might not completely get rid of it.
As for the cycles - I have read on lyme board that certain co-infection in lyme is VERY cyclic (forget which one)...and I think the cycle is every 24 days. You'd have to check the lyme board information (or just google it) to confirm.
Glad to hear she is doing well!
Posted 28 February 2011 - 06:48 PM
The 24 days was from ivig to first episode (this is the one that is exactly the same thus far), then 5 weeks, then 4weeks (I'm sure, I have the dates written down)
It (nausea/vomiting/mild fever) is diminshing over time........... this past time, she felt some very brief nausea, but never vomited (I would've thought /die off/herx/whatever would last longer than an hour or two, no?) Could it be cell memory? Like nothing is actually dieing off but there is a memory of past die-off occuring in a cyclical fashion? She never had Lyme, but did have elevated myco-p which months of zith & biaxin, aug. took care of....but maybe there is a fading memory?
Well, if it is possible I'm sure glad it is diminishing cause we'd like all those destructive b-cell, t-cell memories to be wiped out and never heard from again!!!!
Edited by JAG10, 28 February 2011 - 06:50 PM.
Posted 01 March 2011 - 06:57 AM
Like you norcalmom, Iím thinking the migraine and vomiting might be a herx. The further he is into treatment the less herxing?
Posted 02 March 2011 - 10:05 AM
Our dd 12 had IVIg #1 just after your dd, June 14-15, 2010. She is scheduled for IVIg #2 March 17/18, 2011. I will observe for patterns.
May I ask, did your dd have symtpoms/turning back pages post IVIg #1?
Posted 02 March 2011 - 12:01 PM
I would say mildly. I saw more of that "turning back pages", herx, seeing symptoms you haven't seen in awhile....that mostly occurred during her abx treatment prior to IVIG which was amox., zith, then biaxin collectively for a total of 4+ months. She was an elevated myco-p girl in addition to the high ASO and sky high anti-DNAse B (but no known history of strep) I really think she was in a good place "infection wise" prior to IVIG #1 and that is a contributing factor to why she did so well. She had a string of infectious exposures this fall which interrupted and stalled her progress, one right after another. Abx protocol was too weak, IMO. By the end of Nov, 2010 she was back on daily HD zith. Again, I think this put her in a good place to receive IVIG #2 and thus far very mild uptick in symptoms, a little hyper activity but cognitive clarity with it so...no complaints here!
I feel like she is in a great spot now and we want to get that IgG up. She is having another treatment 3/30-3I. I'm pondering a plan for late Aug-Oct, that seems to be her trouble zone....Will HD zith do it? Perhaps she can be on lower (proph) dose earlier in the summer then boost it up in mid-Aug? Her lil sis brought home strep in Aug; dd11 never swabs positive.
May I ask....and I realize it is hard to tell with treatments in the mix as well, do you notice any differences with puberty onset? No menses with mine yet, but all the other early puberty signs are there.
I'm praying we will create the perfect antidote of immuno-modulating therapy, abx protections and puberty to extinguish what the perfect storm set into motion so many years ago.
Let's pray it!
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