Fixit

Ds started protocol last Thursday with bicillian shot..2/3 Then on Friday dropped zith from 500 to 250 but added amox clav er 1000mg bid and diflucan 100 6pm said he had pain in the center of his chest , area bout size of grape fruit ..lasted about an hour2/4 Didn’t think I saw anything..but got reports that his tics were bad at bowling alley on sat 2/5 Sunday in morning said his right knee aches and is sore when moving it forward not backward....did notice a screech I haven’t heard in months…as day went on, the main tic he has left was really up…then setted down in late eveing …..but his overall mood was sooooo cooperative 2/6 2/7 Mon status-quo 2/8 tues …talks about the great sleep he had,,,but has overall tired feeling that I have begun to realize he has almost always had…(I just thought it was allergy related and not being able to breath…but has been on allergy shots for 4 months and doing great!) At night said a little groin pain on left side. 2/9 ithink tics are picking up..had slight accident but wakes up early enough to only have to change his pants 2/10 seems great in moringing…after school, picking up all different kinds of tics and some olds ones I note the pollen count is up to 7 from 0…mind you pollen down here gets to 3000-5000 at height 2/11..ds walks in door from school..mom my tics were really bad today…about 3xs worse….. Some popping sounds like a cork..head nods,twists,,,stomping..i think I noticed a slight blink which I haven’t seen since he was 5… UNDERSTAND…I can be cynical of myself…so I doubt the decsions I make too….am I nuts doing this to my ds….but why would there be dead dna in his urine if it weren’t live in him recently…. I think this site/blog explains dot blot well http://lymebusters.p...lay&thread=1365 Ds was about 85-95%...so I guess we are about 60-70% now…it hard to complain when I know some have it so bad…but it is hard to watch this when it was just sooooo good… So..are all these little things and the tics herx… Could it be yeast ?...ds is only 85lbs and that’s a lot of abx…I do give 4 tbs of bentonite and milk thistl or burbur after school……give second round of abx about6:30-7..so I can give sach and 50 billion other probis for bed time.. Could I be creating die off because of timing and giving sach at night and the diflucan in the am……and he’s not herxing at all its just too much of other things??? Asked doc about amox dose..shouldn’t it be more like 875 bid….. Doc thinks I should rais zith back to 500mg. No stomach aches, bloating..still seems more on the constipated side…but I still think you can have yeast and he has had it w/o all the normal symptoms.. Any thoughts, observations, hand holding, very welcomed /needed! Maybe is should have just stayed with what we were doing on the zith at 500mg..we were slowly trending better..after a major leap forward with the zith/cleanse combo???

Thanks for sharing and giving insight as to how with healing, awareness of one's self, others and language comes into play.

Melanie..idk..just wanted to say i get how much it stinks and feels scarey. You are doing great and you will get this!

dont know if this helps...but my ds did/does better with zith at 500mg he is 80lbs..250 did nothing..if it did, it may have been so slow i wasn't able to correlate it at the time.. w/ aug xr i have to have ds on diflucan to avoid joint pain... i think as we recently added it back we may still be having other yeast issue rearrise or its a herx...idk

Thank you for taking the time to answer all my questions on the thread...i think all can be helped by any little tidbit, especially getting a man's point of view..and i think not many ticcers come back to talk. My dh tics..he is successful and of course has an intelligent and beautiful wife .. and i want the same for my boys dh and his brothers are the most optimistic people i have ever met.....his brothers conditions have remitted better(to (99%) than my dh..his oldest brother had tonsils out..younger brother though has arthritis and psoris really bad.... but dh says he dosnt' remember anything i ask him about, ie waxin waning, onset.....or so he says..he truly may not have been effected at all by his condition...it's killing me! ps dh still gets strep 3 times a year..

one more question, sort of..till i think of something els besides keeping the strep away....did you notice or did your parents note any difference in your movements..in short fashion ie..2 weeks to six monhts or did it take till you 14-15 before you saw a drop in your movements ie..to lets say 70-80%improvement...and then the last 15% at 18years of age...just trying to get time line and severity of course you weren't on daily abx.... did you do daily abx at onset for awhile to start and then swith to bicillin? or did you get to 70-80% quickly and only flare with other illnesses, teeth?

agree...well said to all

what age did your shots start? till what age..? how often did your recieve them...monthly? for 10 years? at what point did you start proph abx..did it overlap with shots? I am amazed that at age 46, pre pandas, pre everything...that they gave you long term abx ....you were very fortunate!!!!

i agree it doesn't have to get worse because you have lymes....i don't know that for ds getting worse with the first burst, was that it was lymes induced..i think it could have just as well been yeast...which is my real feeling..at least with the vocals(to add more, when ds had an episode when he was 5..as i paged through all the paper..i see script for predisone that helped him then.(pandas not believed).but it was perscibed do to possible abx allergic reaction post longer term penicialln dose) anyway when we did the taper 5 months later, with diflucan(we realized after the biaxin and steriod, per some DAN testing that he had major intestinal, digestion, whatever, type issues)...that he again went to about 95-98% and had a longer lasting effect and luckily when thing digressed we didn't go back to our worst point... would i do a steroid again..possibly...based on what i think is going on at the time....but now with each child i will do a taper, not a burst, and do it with diflucan...at least for my kids..

Yes..my son... his onset was 10 months prior to starting steriod found out in feb 2010 his myco p igg was really high and doc k wanted to do a burst.... so i started biaxin..the next day started the 5 day burst..by the 2nd day of steroid i thought i noticed a screech..by day 3 it was here full force...but i stayed the course with biaxin for the rest of the month and the 5 day burst...things got bad... then 21 days post burst we had a miracluous 4 days.... so..i did get proof of autoimmune..but he rebounded hard..he was nearly inmcopassitated, full body ungelateing(sp) was it the biaxin as i have recently noted about 6 people who also noted vocals and biaxin.. probably defiinely the steroid as it really increases yeast... and herx, as now we are pretty certain, as you can be that he has lymes....and if that is the case he either had it just pre-this onset..since he was five or in utero as we prepped to see doc L and we knew her protocal..we then attepmpted a taper about 5 months later, we had nothting to loose at this point,.. he had also been on several abx off and on....but this time we added diflucan with taper...well that was also fablous, each week was better and better...he was about 95% or maybe 98%...but that was short lived as school started...blah ,blah....but he did not go back as far as he was pre-taper.(no rebound like with burst) its a long story..have fought screeches ever since..but notice corrleation to treating gut via vanco or clyndamicin and screeches would remit by end of treatment and stay away for a few weeks.....then after clynda(used this because of t&a he had) was replaced by a lesser vocal... then after that,,,as i prepped more to get ready for pex...as per all the advise of be very sure of not having lymes..i have done several more tests(as his early test was very iffy)...it seems to be he does have lymes if anyone does(or at least something that looks and act like lymes..SOT)...so we will see...

Very interesting..and i too bought such a product about 2 months ago..then when i read the ingredients it had strep. T in it..so the wonderful herb store i bought it from let me returen 2 bottles...i think they may have been the ones to recommend based on something i said......hard to remember who i said what to and for what reason... maybe i will try to reivestigate a different brand..as all of theirs had strep T...... i think like amy said it might be like spitting into the ocean when it comes to our kids...but maybe its the long haul thing... as i can't say ldn did anything amazing...but just as we were going to go off of it again...both lyme docs said stay on.... i guess slow and steady win the race..

also interesting is the first item about yogurt and strep.L..maybe that is the reason why so many put a correlation to eating yogurt or that strain and things flaring

very interestin..read most of it... interesting about melitonin...too much bad..low good.. one takeaway i was able to get was..as i told him i was going to discontinue it, didn't need it any longer..he said keep it going at .5mg as an anti-inflamatory!!!

worsening could be sign of herxing.. jmho..i think herxing can be for any critters that are dwelling w/i

3 pan/pit boys ...ticcers (mostly)...

share or make all the girls jealous... sings..plays guitar..he probably takes out the garbage without being asked!!

you have alot of variables... please report on what the lab shows...very curious No help here...just sending sympathy

yes i like rosignal and smith....i would see murphy and rosig if you can...i pm'd you

so busy today..ds8 almost tic free started up again yesterday..2 hours later sore throat..just got home from peds...have to get ds3 in 2 minutes.... is short i think it is a huge correlation for alot of ts and pit/pan kids... it is talked about frequently how MOST ts patients seem to have pretty bad allergies..not that all with allegies(same as with strep) will develp ts... and unfortunaely for my ds...i would treat his allergies as a cold..since i never had allergies..didin't know what they were....and then per all the mucus and things getting stuck in the sinuses and such, not draining and beinga able to clear..i believe his first strep was in March when he was 3....and again unfortunately, as i have never had strep....did not know the signs till the tics started about 2 weeks after he started to throw up and had a fever...rest of the story goes from there.... i have talked to a mom who's dh tics...and subsquetnly her 3 boys..now successful(doctors and lawyers) young men were all diagnosed with ts...and one of them had it bad... she did not seem to want to buy into the pandas thing...as i guess her research all those many years ago, lead her to more of what Bonnie does on the TS side..she could see a correlation with allergies and treated them with vit b's partiuablly b5 and keep a clean eating life style.....she says 2 of her boys have mild tics and 1 is unnoticable if at all...one of them is in denial that he ever had ts...well i think he is right in the regards he has a immune conditon...his may be allergies, someone else strep, someone else celiacs..blah blah blah and just to reaffirm..ds eyes swell shut, can barely walk because he can barely breath..he was in full sydnams last april...i had to do more then just zyrtec as that does not get to heart of problem.... i was scared to start as we were in better place when we started about october...but i knew going forward we would be back to were we where if i didn't do more.... doc b started him super low...and i do not notice any flare from shots at all...they even seemed to settle him down a day or 2 after when we first started the program..... and currently holding in a pretty good place ...i guess...at least compared to some of the worst times....and may be trending better slowly?????(from my mouth to God's ears) also dh (who has some tics)brother who had scarelt fever as a child, had a small ocd period in his youth...has horrible alleriges...well he started back on allergy shots....and now i notice he doens't do this one thing anymore(in the last 2 years since starting shots back)...(which i thought was a tic, but he said it wasn't) And ...his son..always had a slithg tic...that the mom said was allgeries...i don't know if she really believed that herself...but she indirectlys started me on this journey by that statement 8 years agos....her son is doing well...tics just stopped this thanks givivng.... she didnot do allerys shots for him thugh his tics were pretty consistant and allergies pretty bad.... just treated him recently for some gut/digestion issues...and all tics stoppeed...the main center for allergies lies in the gut!!!!dibiosis!!! hope that at least kinda answers your question

as per other post... ds just started about 4 months ago.. but we are probably only 2 months into real dose... Doc B in CT started ds super low as per pandas and per he is extremely allergic to all enviromentals... it is feb in GA..i would usually see watery eyes by now..but it is early and it's been cold here... no reaction to shots...about the 4 th week..did have a little itching at site...but that passed and doing well

Just want to add...great find i have not read thread in full or even first post.... but ds is doing allergy shots.... here in ga our counts are startin up... i usually see something in regards to allergies..eyes, drainage.. so far..holding...we are only about 4 months in but note that ds was started on extra low dose..so we may have added 2 months in the front to get to your standard starting dose.... pan/pits have immune problems...whether allergies, viral, or auto immune..

There's no citation or study to support her statement that steroids make things worse in Pandas kids. It's been reported that steroids are contra-indicated in TS patients. So I think you do need to be sure you have Pandas and not Tourette's. But the majority of parents on this forum report a favorable response. I think it's a very personal decision - one you have to make in the context of your own child and in consultation with your doctor. I'm in no way trying to push one way or the other. Every treatment has risks. Steroids are not a no-brainer. But I would not let this one statement scare you, especially as there's no study cited to support this claim. It just doesn't match with what most of the Pandas doctors and researchers have experienced. I agree with LLM - I am not trying to push steroids by any means, but I would not let this opinion be part of my decision (plus it looks like there has been no updating of literature since 2003, even though it states the site was updated in Jan., 2011). The only reference I've ever seen for steroids with kids with PANDAS was the 1995 PITAND study by Allen, Swedo and others. I cannot find a link to the full text article online, but here is the abstract http://www.jaacap.com/article/S0890-8567(09)63789-8/abstract The abstract does not really talk about the steroids, but basically this was a review of 4 cases of boys that they thought had an autoimmune trigger to their tics and/ or OCD. I cannot figure out how to post a table or columns on here... but here is the breakdown of the 4 kids (hope this makes sense) Case #. age / dx / infection dx / intervention / Immediate result / Several months later 1. 14 y.o / Tics + OCD/ GABHS/ Plasma-pheresis / Symptoms resolved & basal ganglia size reduced / Continued success 2. 10 y.o / OCD / Virus / Plasma-pheresis / Symptoms resolved / Continued success 3. 13 y.o / Tics / Virus / Prednisone / Symptoms decreased / Returned after a virus & subsequent prednisone unscuccesful 4. 13 y.o / Tics + OCD / GABHS / IVIG / Symptoms resolved / Continued success So - of these orginial 4 boys, one had OCD only, one had tics only, and two had OCD and tics. The one that had tics only also happened to be the only one that was treated with prednisone. The prednisone did help initially, but when they checked back a few months later the child had experienced another virus with a return of tics and that time the prednisone did not work. So... If people are referring to THIS article as saying that steroids do not work for tics, I would have to say that it is really only based on ONE case and that it did work temporarily (which I think is what most people understand about steroids today - they stop the immediate autoimmune response but do not cure the PANDAS). Also, this child did not respond a second time, but that was 16 years ago and it is quite possible that he had underlying infections that they were not aware of at the time. I don't know if that makes your decision easier or more difficult. I still say the first step is to remove infection to the best of your ability before doing immune treatments. I also wish we could track down these kids (who are now in their late twenties) to know how they are doing! Good luck! did not read all of above fully... but to me if tics got worse with steriods...to me...that indicates an infection that was not cleared prior to steriod lymes. yeast. other unknown illness. JMHO

just started some lyme protocal... at what point do you add lymes plus or transfactor? now..2 weeks..1 month???

got to run...but i think so... saw her in aug...asked why his tonsils weren't out per 15 documented streps... she did not rquire it..but if were to procede with big guns i wanted them out, not to regret in hind site had them removed in sept 2010...thought that would be happy answer...and i think for some it is the key to healing... however ds has not completely remitted..in current pursuit of lymes..llmd we saw thought it was good we had them removed.

you might want to read lymes board... as far as i know the only one is labcorp.. i haven't heard reports on the igenex version http://www.researchednutritionals.com/information.cfm?ID=200 CD57 markers can also be expressed on other kinds of cells, including T-cells, so it is important to distinguish between CD57+ T-cells and CD57+ NK cells. Clinicians need to be aware that many testing laboratories claiming to perform the CD57 test are actually looking at CD57+ T-cells rather than CD57+ NK cells, which are the cells of interest in chronic Lyme disease. and mind you...if you don't think its lymes and feel you have investigated enough and your mommy gut says back off, that's ok... we let it go for another 8 months...and maybe the fact we did more abx during that time has released some more lymes particles...don't know...but now it seems to be screeming at me, when i combine the most recent tests...past tests and past and present symptoms and knowledge of symptoms ds is just starting to talk about... (he's a guys guy...pulling teeth for any info)..and i don't want to feed him info..i want him to explane his own condition to me w/o prompting him or making suggestive influences..