michiganpandas

thanks so much....i just feel like i have some liquid gold in my fridge right now and not sure if i should use it....she really is "fine" right now...i would say has bumped up to about 90% better after being at 80% all summer. I guess I was wondering if a quick 5 day does might help with something??? (maybe get rid of something lingering?) or inflammation? i don't know? I guess it also confuses me when people say they take their kids off of antibiotics that they have a hard time??? is that because they immediately get sick again? or were the antibiotics keeping inflammation down?

Ok....so I have a prescription of 200mg of azithromycin that I obtained when my son was sick last week....(i talked the pediatrician into it and she is one who is against giving antibiotics as a preventative method)...anyways, my son got better and we have no infections in the house and my daughter is actually doing pretty well at the moment. my questions is...if i gave her the azithromycin is this the same type of treatment that most are on here who are taking azithromycin? (it's the regular stuff given when someone really has a positive infection.....or is the prophaytic form of azithromycin different? (am i making any sense?) would i be doing her more harm than good if she is "ok" right now? I guess I'm just afraid of the beginning of school and I don't want her to get sick now.......if i do give it to her would it be better to give it for the 5 days or could i extend it and give it every 4 days? i know i'm sounding ignorant...it just worries me that i will messing up her system if i give her an antibiotic when she does not have any known bacteria present. thanks for any input!

We are not on antibiotics at this time....only took the 5 day azitromycin (sp?) in the beginning when things were HORRIBLE in March....have seen steady improvement since March and she is about 90% better (just left with some ocd fears that she understands as fears and is working on overcoming)

Hi...since this post we worked on this (for just a little bit) in therapy in the summer...she does still have the fear, but it is MUCH better....we also just started last week trying more of an actual exposure to her fears and that is helping as well. She is kind of starting to really understand that her thoughts are tricking her and she has to "throw them out".

Hi...I should probably know this...but, are what is the difference between phrophaytic (sp???) antibiotics and regular ones? is one "stronger" or are they the same, but one is take to just prevent sickness?? also...are some antibiotics considered stronger or maybe even harder on their systems than others?

I joined this group in march and have often thought about you and your daughter....i really hope she continues to improve...if there is even slight improvement now then i truly believe there if FOR SURE going to be a day that you will be able to have this all behind you. That is great she has a friend... Thanks for updating and sending continued prayers for you and your daughter!

I so needed to read a post like this today! That is great news! I teach Biology and don't think I could even handle an AP Biology class right now!!! That's truly amazing! Again, can I ask what the anti-inflammatory supplements are and the glutamate-modulating supplements are?...(you probably already told/posted about this at some point, but I can't remember! Again, great news!!!

thanks...i just wondered if EVERYONE and ANYONE who get the test they get a positive for lyme from igenex...it seems like most people do.....but, it sounds like tamistwins has one child who did not. Not trying to sound skeptical, but that does help to know that one person did not. Also, if it is such a reliable test why don't most doctors use it? Again, totally just asking...(I just ordered the kit).

Just curious if anyone has been tested with a lyme doctor or through the ones you order on line and ended up with a negative result?...or do most people get some kind of positive?

Hi....We have not had PEX, but just wanted to say that I am sooooo glad you are asking these questions...they are great questions. Good Luck in your decision and keep us updated

not sure how it plays a role....but, i did just find out my daughter is low for IgM

I have often thought that this would be the best solution

i can totally relate....and yes, i think therapy would be helpful..and maybe your son's homeopath could help, too. and you know i'm going to ask...but, since your son's are doing better...what type of treatment do they get (i know homeopath is specific for the person, but just curious about supplements you are using, vitamins, etc.) Also, are they on antibiotics? My daughter is not and I ALWAYS worry she should be on them. again, you are totally not alone in how you feel....how could anyone NOT feel like this after our kids have suffered this much!

what is dr. b's name and where is he located?

could all of the stomach pains be anxiety? i don't know a lot about herx symptoms, but that would bother me to give something that seems to make things worse. so sorry your son is going through all of this and also sorry for the stress of not knowing what causes what....hope it's getting better today.

amy...again! love hearing "we are doing great!".....and i have to ask...is your daughter on antibiotics still (after the ivig) or were you able to stop?

Hi...we can't get in until sept. with dr. c.

Hi...I am waiting approval to get a PET scan for my daughter to see if there is inflammation of the basal ganglia....if so, then we will do the ivig.....just curious if anyone has had one done? (i know the michigan group has had a few of us). If you have had one for your child did it show inflammation?

How in the world would you interpret this? is it always accurate? why don't infectious disease doctors use this test? do you order this test and then send it back in the mail? also, does everyone test positive on some bands? sorry to not answer your question and to ask more.....but, i'm considering looking further into lyme and just not sure

Thanks again for posting... I agree that it is sooooooo nice to not be where we were in march....did your son go to the same school as you teach at? thank goodness if so....i had to take a leave of absence from teaching so that i could attend school with her.....i am sooooo afraid of how it will go in sept. also, what does the olive leaf extract do (could look it up, i know, just being lazy!) and also, interesting about omega and dha not being good for you..i started that w/ my daughter and think it is helpful, but maybe it would help to actually stop?? what did you think it was doing that was negative? if it's anything gut related then maybe i'll try taking a break???

thanks for posting..it is always encouraging to hear success...i actually feel like i am the only one on here that still debates about antibiotics...we started this horrible nightmare also in march (with strep 2 x's and sudden changes)...my daughter was EXTREMELY bad so i understand...she never had ANY problems and very emotionally stable, fun, perfect kid, etc....and couldn't even leave my bedroom, tics, ocd, and yelling in fear all day long......we did do the standard dose of antibiotics and it took my daughter until the end of may to be 85% better....unfortunately that is where we linger....she is totally back to herself, but has ocd fears...(that she can overcome on her own, but still sad that she has them).......we even tried 6 days of azit. in the beginning of june and she remained totally the same. your post makes me think i should force the antibiotics?....so is your son TOTALLY back to normal and great?....i'm so happy for you....man, i feel like i'm failing my daughter, but yet i feel like the antibiotics would not really make the difference for her only left symptom of the ocd fears.

T.Mom... You said your son has ocd intrusive thoughts....is he on antibiotics?....is he being treated for ocd with meds or therapy (if you don't mind me asking?)...if on antibiotics did it help at first, but then the ocd intrusive thoughts just came back again? I am asking b/c as I, myself, continue to struggle with whether or not i should force getting my daughter on antibiotics.....same situation here, our doctors will have nothing to do with long term antibiotics unless there is an infection.....which i kind of agree, but just wonder if it would help

I agree...make sure you are not taking anything that gives the same effect as the current drug.... also nancy...i just wanted to find out how your son is doing with those supplements...i know we are in the same boat w/ the ocd....is it managed pretty well and you take the valarian root when needed?....i feel like my daughter is managing herself and learning how to cope....i just wish she didn't even have to try to cope and not even have the fears/anxiety over the thoughts (if that makes sense?).......also, i don't know if i ever asked...but, did you ever opt for the ivig?

hmmm...my daughter twitches really bad all night long...but, it does not affect her sleep....i wonder if melatonin would help stop the twitches....i wonder if those twitches are seizures?

Hi...please keep us udated after the ivig and best of luck....i have no advice because i have not yet decided on the ivig....i can't even get to the point of the antibiotics yet.....i totally understand the post traumatic stress....it is like i have lost the life and child and family situation that we used to have and it is heartbreaking. I am also afraid to just go the ivig route b/c we are "surviving"....(not the same and sad to think that intense ocd fears are "ok")....but, I have a feeling we'll be making the same decision as you. I keep thinking about the whole saving sammy situation as well....he seemed soooo much worse and then got better and didn't even have an ivig done (i think?)......but, i often wonder if puberty or age just started kicking in.....i don't know...just all new to this.....but, hopefully the ivig will speed it all up so that it doesn't have to be a waiting game. Again, PLEASE update after....it is everyone's updates that really help in making these tough decisions. Again, good luck!!!!