Fixit

Several questons.. lismom..when you say. Bart and lyme have facial ticcing as a big symptom contributor. is that for your son, or is that a known condition caused my lyme/bart...that would fall into our thing things have been sllllooooowwwwlllyyy, still improving, i think, you know how some days you think...ok they seemed better, but was i just not paying attention, or hoping it better? but still better than we were 3 months ago. we started rifampin on Saturday, 6 days ago...at first i thought things immproved, but we had screeches yesterday and we haven't had those in while. I have correlated his screeches/vocals to a gut infection of any sort. Is this a herx? Does rifampin cause more yeast than other abx...i remember the dr saying get yeast under control before you rif!?!?! should i pulse the abx..4 days on 3 off to give him a chance to detox and rebuild gut? or is it normal the first time with rif, that you hold the course for a few months then pulse? i also added..about a 16th to a 32nd of a tsp of nac(i have super small measuring sppons) the last sveral days? does nac increse yeast? if i added nac is that moving metals and is that the problem? Some are saying that upping glutithione is really the problem as that is pulling metals? Do i have that right?

Oh Gosh...i hope that last sentence is not even a possibility...pew, pew, peh, peh(that's spitting) But yah... i think something along the lines of this is happening

This is just my thought. YOu can still have an infection even with calming inflamation. For us steroid don't hold. Maybe that is why some ivigs don't work. The ivig don't get the immune system to its right place and the infection/load is still there. Or if the steroid did work, then the load wasn't that high and the inflammation is just out of control due to original infection, then add abx , poor diets, no matter how good you think your diet is, chlorine, floride in water and other things disrupting the gut. So then you just need to bring inflamation down and not get it to reignite. ie..if you have a bad fall, you get a bad sprain, cut, bruising. But even if you don't fall again, but just keep bumping it, or irritating it in any minor fashion, the injury will not heal. On note with some of this, i found a Dr who deals with nurtrition as a way to healing, and health. I was trying to find someone in relation to what i was doing food and suppliment wise. We did an ALCat test with him and ds is leaky gut all over the place. We are eliminateing those foods as well as all of the known foods that cause itchy mouth. Hoping to see more progress!! What i wanted to say is that i like this man, as for the fact that he believes in everything ds has gone through and respects my understanding. He thinks that there is no doubt that ds has chronic infection, based on some labs, and thinks that he probably has other infecttions that our current, human technology, cannot measure. He believes that these infections are smart and after a few rounds of abx, go deeper into the body where abx cannot get to them. He thinks it is likely ds still has strep that does not blood test. I find it fascinating that this DR, who can prescibe any med, though may not based on his understanding of long term effects, but willing to work with my drs, said that about strep. I muscle tested ds with a second ART DR,(i have 2) and ds does muscle test for strep.(no pos labs at this time) Anyway this Nutrition Dr, thinks that once the body is in biosis, ds' body will shed the infections and metals on its own. He is looking into other things to aid in ds recovery. Be it i.v. glutithion or such. If somone in atlanta area needs a good starting point, i think this dr would be of value. I really believe the gut is the place to start. ALso this dr seems to be very interested in helping my DS. So we shall see. Wish us WELL!

yes same here. increases ds symptoms. increases dopamine. feel like i need to add. i tried and stopped again. where do you get a 200iu dose? 500iu too much... almost 13yrs old...105=110 lbs...and he is on low side ..i feel like he needs it... also on restricted diet. have drops of pure d....but 1 drop is 500ius

as mom of ticcers... they might get worse before better or just better. per my experience it is also best to give anti fungal, steroid increase yeast. so flare of tics could be yeast if you are not covering. steriod worked unexpectedly on pandas flare when he was 5, though no one would listen to me about strep/tic thing, hospital gave as they thought it was a pencillian reaction to prolonged use since the strep was just not clearing. burst only gave a few day repreve a couple weeks later. taper lasted a few weeks but we lost all ground he made with it and i don't believe steroids are our answer at this point. pex was a failure. not going for ivig...but never say never.

Yes, my ds 1st ever vocal tic was from Baixin and possibley steroid. My dh has mild tics and my 3 children are pandas representing as tics. youngest 2 are in remission, still working to get ds12 into remission. it has been years of me fighting to have drs acknowledge my strep/tic correlation that had full remission, until his 15th(approx)strep onset. My dh is slowly joining into the protocal. He is better since i had him get his tonsils out 2 years ago. I am finally getting him to listen about getting his massive candida overgrowth under control. I think there is hope for all. Unfortunately, there is no such thing as one size fits all when it comes to managing these conditions. I think alot of it is in the gut. There is alot to investigate and you can search many threads to get started in the right direction. If i had to guess..again idk..i think that your vocal may be tied to a disbiosis in your gut, ie candida, bacterial, viral, gluten sensativiey, the list goes on. Methylization(sp)tends to be an issue for some people too. I am currently investigating how the cells in our body process food and toxins. I don't hang here..i'm mostly on the pandas and lyme board. I just caught this out of the corner of my eye and wanted to let you know that an abx can help some tics, but may flare some other condition in the body. But my thought and hope is that all are treatable.(unfortunately, it may take a very long time!!)

Yes i believe candida can cause tics. It might be secondary to something else..idk..but it is definetly a toxin. Watch carbs/sugar. as mom of ticcers skip omegas...your child might need omega 6 and not 3 at all..try to get it through food...it depends on what their cells are going i am in process in trying to figure if he needs borage, or primrose..i'm guessing primrose. i would say work on the gut..and maybe find some low dose k2 in form of mk4 and mk7...7stays in body longer and you can give too much. i would say z, mag taurine if you can get, b6 form of p5p...maybe b12...maybe give 1-2x a week...but maybe your kid needs more...again idk.

For what it's worth, i say treat. you caught it early and you evidence. Hopefully she will rebound strong,partially due to your quick action and the course will be short!

there is one called anylabtestnow.com i think there are a couple of other such places once you search this one

Besides increase in tics, did it increase hyperness or stimulatory issues, or just the tics? dh does have tics as well. he is also in a better place than a couple yrs ago when he was getting continual strep infections. He has finally gotten on board to be more active in treating his massive yeast issue. so the tics, if i haven't lost my mind..seem slightly better. i have always felt he could use something for add/adhd, but i would never want him to go on rx's for fear of increasing tics and other side effects. he says he can't quite articulate it...but a little bit less distracted and slightly sharper(maybe because he's less distracted?) he is out of town, but i will ask if he can expand on it. He takes 1 100mg pill in the a.m. He is 6' and 195ish. I will keep an eye out for an increase in tics and tell him to do the same. i will definitly keep an eye out for ds5. He has been in pandas remission for about 2yrs. I find things that affect my kids during flares, do not affect them when they are not in an episode. I only have him on 1/2 a wafer and it is a combo product. But i also wonder if the teacher is too pickey. i don't know if she has any children herself. She even says he gets the material. He is the youngest in the class, and a boy,..... who,...has 2 older brothers to teach the young grass hoppper their clown like behaviors!

Just to chime in what i know as this is some of the stuff i have been investigating. Ds5 seems to be having some add issuses, along with ds12 allergy etc, and dh issues. we are using zinc picolate, it is already chelated. zinc depletes manganese, zinc and b6 deplete copper, zinc works better with magnesium(we use mag taurate) this balanceing act is tinuous. i think i found a dr who will help me keep these in balance as i go forward. i can investigate, realize the effect/ but need to realize secondary effect ...get that down and it trickles into something else. the wonderful thing about this guy is that he believes in chronic infection and thinks that ds12 is infected with stuff that he is not even tested for based on the fact of the number of things that do show up. he feels like once the body is functioning properly and in balance, that he will start purging these infections on his own. he hopes to get ds off of his thyroid meds, allergy shots, abxs.... FROM HIS MOUTH TO GOD'S EARS!!!!!!!! i had ps100 here for around a year but never started anyone on it, DH just started and really likes it..he is also my guinea pig for "active child" which dh seems to like. i am giving ds5 a 1/2 a chewable...at first i thought it may have helped..but maybe he needs the whole thing. also, it has only been about a week, 10 days and may need more time to absorb...i feel like less is always better....it has DMAE

My son did not do well on probiotics either. Increased tics. We do without it. he does not have gut or yeast problems so fortunately we do not need it 911 and Kathy, are you giving abx currently? and if so, are you giving anything for the gut, ie fermented foods? Gosh, i would just be very cautious knowing now, what i do about the gut? how much worse were the tics on the probiotcs? Maybe you needed a different type? we are in a pretty decent place right now, but also on abx? But always thinking like most here, i wonder if something i am doing is holding us back from 100% Does anyone out there think the probiotics were causing some herx, displacing yeast or other parasites? not saying a herx was or wasn't a cause, just asking for thoughts. DS 23 has been taking 250mg zithromaz since Oct. 15. He is also on immunosuppressant - cellcept and prednisone. We have tried other probiotics, but he is not taking any right now and seems to be fine. tics were pretty bad and have stopped. but still holding on to ocd thoughts processes and avoidances. Making small strides. Began cellcept and prednisone nov. 12. how did you realize the probiotics where the cause? how long is your ds intended to be on the suppressants? i am not familiar with cellcept. Pred can really cause some yeast, stomach issues. on another note..... my ds12 about 105-110lbs takes 500mg zith. maybe if you were able to get a higher dose you might see more gains.. there are no rules and it may be too much for your son but i think it is worth a try. I think most here are on higher doses of most abxs I am glad you are progressing with your protocal as it is. That is certainly good to hear.

My son did not do well on probiotics either. Increased tics. We do without it. he does not have gut or yeast problems so fortunately we do not need it 911 and Kathy, are you giving abx currently? and if so, are you giving anything for the gut, ie fermented foods? Gosh, i would just be very cautious knowing now, what i do about the gut? how much worse were the tics on the probiotcs? Maybe you needed a different type? we are in a pretty decent place right now, but also on abx? But always thinking like most here, i wonder if something i am doing is holding us back from 100% Does anyone out there think the probiotics were causing some herx, displacing yeast or other parasites? not saying a herx was or wasn't a cause, just asking for thoughts.

Lily, went back to your post on lyme site about not sleeping. Are you giving D bid...that might cause for not sleeping. Every kid is different..but just thinking out loud.

i don't know how accurate this statement is but, per one of our lyme dr's...you only produce/absorb D for a short period during the day. So it has to be there ready to absorbed. The thought is the that function stops or shuts down after a couple hours. i guess along the theory that alot of your digestion, aborbtion happens while you are sleeping. I also guess you could correlate it to the sleep cycle...where the sun wakes you up if you leave your curtains cracked just a little. Then other brain chemicals kick in at night to help you sleep. So if you are dosing bid,,,you might be wasting it, or it is floating around causing other problems. Ds has a hard time taking it...i am trying to dose just 500iu 2x week and best dosed in the a.m. for us. I too only take it in the a.m. It is stimulatory for him.

Holy Smokes…thanks for including me in a group of such heavy hitters. Thank you for your help and support too! I too don’t know where I would be w/o everyone here or this platform. This condition definitely requires a group effort. I am soooo happy for you and your family. What a wonderful story of recovery and hope!

Besides those mentioned.. There is a Dan in islen nj..neubrander i use the PA Scott smith. usually you will find alot of these dr have children with like isssues. Knowledgable, open minded, friendly. i thought i heard rumors of either a lyme or pandas dr in newton or horsham PA

This is wear most people going through pandas/lymes are pioneers. When the jt pain first happened to ds he was 5. it was about his 6-8 time on amox...due to strep( of course a tic flair, and drs telling me no correlation) anyway..the strep wouldnt go away so we started another round of it w/o abreak...and w/i a few days of the second round he had such jt pain we went to er, where they switched to zith and a steroid. Every thing eventually remitted. We continued with strep infections and pandas flares and complete remission in between. With this Continued on set about 3.5 yrs ago, ds12.5 just turned 9. i could not get anyone to give abx. When ds was almost 10 about 1yr post onset..he was given biaxin(for myco p) and a steroid..thing got bad..extreme screeching etc(yeast and a i don't think he can tolerate biaxin.. about 2 weeks later started aug xr as dr did not think allergic to amox, but possible RF and in a week we had the SEVERE jt pain again...but..the steroid kicked in and his panda tics remitted.. Another dr wanted to try aug xr again and it thought he was nuts...he said, since pain was delayed, it was not an allergic reaction as we were to it but yeast creeping into joints and gave us an antifungal with it....well to my surpise no joint pain at all while we were on it the one month. But we stopped that abx and moved on. We got the vocals to go away. I thought go natural...tried GSE..1 drop....and screeching vocals started w/i 15 minutes...i wanted to die. They lasted until we started VAnco and another antifungal and it took about 2 weeks to subside and another 2 to remit NOw that i know..GSE really fights yeast..i think it was die off. I cannot ever try GSE again due to PTSD. It is very difficult to decide if jt pain is yeast or herx. This is where you and your dr need to be a team...and unfortunately i think you need to be the lead, as the observer/practiioner/parent. I also have 2 neuros, immuno, 2 Dans, llmd, 2 secondary dr llmds..one is also translates to family practic...and i think i found a DR of nutrition to help me further with diet and GET THIS ...he believes in PANDAS and LYME....but i dont't think he is keen on abx...want's your diet to be your medicine...we shall see. If this DR is a home run i will let others know. Wish me luck with this guy!!!

That is good to hear! I'm torn. Don't ever know how these kids will react. And if finals are coming i don't know if i want to chance him getting worse and having to deal with that. On the other hand, i want to keep moving forward.

My thought is that yes, the vocals can be caused by yeast. Per me and fcefxr we have direct correlations to treating the gut and remittance of vocals. Yes, Augmentin raises yeast to the point that when/if ds goes on it, he needs to have an antifungal with it. For my ds12 the yeast gets so bad on Aug. that it gets into the joints and causes severe pain. If there is a disbiosis in the gut that could cause pans symptoms. And unfortunately sometimes as you treat the disbiosis the pans seems even worse. So you start to fear treating. It is a vicious circle. It is hard to confirm lymes, but i would definitely investigate further. I am not that lyme literate and not sure what your bands indicate.

Thanks to all. I will look into the liquid form too, and good to know about refridgeration. I just received a call back from dr and yes..stay on all abxs at current doses. With this info..i will wait until Christmas break to start, since it sounds like things can get rough. I hope i can stay as strong as all of you holding through a herx like those mentioned. Maybe DS will not herx and only continue on the progression toward being healed!!!!

I have not fully read the replies. Have you tried B vitamins? I use busy-brain by rainbow light. I first took 1 pill and felt that slight..oh, just let me sit down, that groggy car ride feeling. after first time that effect wore off, but now i take 1/2 pill daily...i have energy for the day(not hyper) and can fall asleep and can refall asleep if something should rouse me.(i am a brain never turns off person)...thoughts actually wake me up! Caution in that this particular one has other things like gaba(my ds does not seem to do well with gaba)..i will have to retry at some point.....but it does calm and give me clarity.(anxious mom...i have a few things on my plate). But i think the secondary effect is that once the vitamins take effect for the day, it sets up your cycle to sleep at night. if not this product maybe you can find something that might fit your dd or this one might be it?

Can i ask anyone who may know.... we are probably starting rifampin this month. ds12 is on 500mg zith, 300 cefdinir bid, and valaclyvir 1g bid... should the dr lower these doses or eleminate 1 0r 2 of the above abxs when starting rafampin.... he did not say to do that... I was going to put a call in to him tomorrow anyway...but any info or experiences appreciated.

With my ds12 i was lucky to have complete remission w/i a month with only a 10day course of abx...this was when he was young and way before ANY acceptance of pandas. however when ds10 had strep followed by mono w/i a month(i wonder if they actually came together?) it took 3 months for tics to remit. So if you just saw this new improvement i would give it more time and see if you continue on the healing trend. I too am seeking 100% for all of my children!!!!!!

Well, i think that there are kids that can find recovery if you can find the what that particular child is missing or the areas of the immune system for which the child needs support. My boys are all pandas(ticcers) with other slight issues like sensory, disgraphia, add/adhd, etc. So we use scott for help in these areas. Through blood urine testing and other, they can hoan in on some things that are out of balance, and sometimes just through your discription of events. I might be calling scott soon to see if he can guide me further in what i am doing for the gut, etc. Waiting for an ALCAT test to come back as ds now seems to allergic/sensitive to anything that cross reacts with his extreme enviromental allergies. But all these thing cost $$$$$$ and i try to space and logically thing of next step or dr who would have the next peice of puzzle. Scott is a great listener and will not dismiss thoughts or research you have come across. He is always learning. It would be nice if One dr had all the answers. You may hit on just that thing for your child. I have seen it even with the brain balance program for some kids. I may go back that way again as i move along. I would like the kids to go through a pans/pandas/pitand/lyme car wash. WHere the child and parent sit in the center. The urine/stool/blood are drawn in advance. THe patient is then viewed by 6=8 specialists AT THE SAME TIME(nuero, immuno, nutrition, dan,endocro, etc). So when one question is asked, they ALL get to hear the answer. THen that might trigger a question for the other dr and they ALL get to hear the answer. So it is more of a brain storming for each child BECAUSE THEY ARE ALL SO DIFFERENT and a 3 month protocal is set in place with a car wash set up at that time.