Fixit

i have space in my mail box?????? i will pm you.

Hey Betty, I just checked out the lyme site and juliafaith posted something regarding her child and hhv6 and removing mold. Maybe you want to pm her. post is "holding steady"

Not my story, so i don't know the fine details. Patient had very high hhv6. I believe they used arteminsinin. It took a loonngg time to slowly bring down the number. i don't know the dosage. I also dont remember if there were other naturals or abx's used in combo. But definitely ate clean, super healthy and detoxed. Tics did improve as number came down. I dont know current status of titers vs tics.

TR, what a wonderful experience. So happy you could see your full child. I have a freind that has seen improvement/remittance of autism symptoms with abx. But once the abx stops things return. I am trying to get her to read this site. And told her she needs a longer course of abx I am going to forward your story to her. Per some pan dr's i have heard that you may want to stay on flag, vanco, or clindamysin for a month or 2 or more. we see great results with those abx also. Also do not to taper off of these particular abxs, so that you dont build resistance. I have been hesitant to stay longer than 2 months due to resistance build up to those particular abx. i also believe you can have c.diff and be constipated. not all people are the same as we know. also just a little c.diff for these kids could be a problem as they are so sensitve to whatever my be i Please be sure that you are giving hd probiotics of varying types, particulaly Saccharomyces boulardii. But not give SB with anti-fungals due to die off effect. Here is a pretty good article that talks about some of the types and what they might be good for. Also check out Great Plains site to see what they recommend for see Diff in regards to probiotics. http://articles.cnn.com/2009-03-10/health/healthmag.probiotics.stomach_1_boulardii-probiotic-saccharomyces?_s=PM:HEALTH

I'm glad. If you can get a cap from a hershey's syrup bottle(maybe buy it or if a neighbor uses it), it puts out exactly one drop at a time. so based on how much meds, you can make it like spackle and they are not getting too much syrup but still sweet. for ds5 it's so little meds, that one drop is enough for his thyroid med. Santa Cruz makes an organic chocolate syrup and the hershey cap fits on it. They also make a yummy mint choc. syrup too! When your ds is ready, i started ds9 swallowing the pearl probiotics. They are small too and at least it's something you want to get in them. DS12 started with big pills when he was 5...he is such an old man already..poor guy.

ds4 now ds5 needs armor for thyroid. each pill is about the size of a poppy seed. he will not swallow. he needs to take 2. i crush the pills between 2 spoons. then add just enough chocolate syrup and make paste out of it. it sticks to the spoon nicely and is proud he can take it himself.

OH PLEASE..Do NOt Get Me Started! Peglem is right. So when i told them i can see what is triggering the "TS" i was told,,,,these are the words the dr used, and i can feel the steam coming out of my ears now..."he could have just as well had pizza the same 3 times"..(i figured out the tic/strep correlation by the 3rd go round..as ds would be 100% tic free after 10 day course of abx) I am trying to stop myself from going on with the above story. But my new line to dr's is something like if you are so smart to get your phd, why aren't you smart enough to listen to someone who is actually witnessing what is happening? that is why drugs get put on and taken off the market...patient info and response(sometimes unexpected reactions) to medication !!!! i personally had nothing to loose by telling him this since they will not help anyway. Pans is getting wings and i still tell drs our story wether they believe me or not in hopes that it might be the one to change their narrow thinking.(ps they are just cattle, they are not researchers as we parents are...they are regurgitators, drinking the cool-aide, just spewing out info that they are allowed to say. and are not allowed to listen to mere personal experiences, unless you are in a focus group....that is the only time your experience/information is real to them) Seriously, i am really trying not to go on and on about how stupid many drs actually are(in all fields, not just pans). Now, to what is working for my ds9. DS12 still in 3yrs flare. DS4 in remission, other than why is he still not growing, and it might be related to pans..idk Anyway, since he is 9 going on 10, i feel that these preteen years have more hormones going on than we realize. And that is why, other than repeated infections, most pans kids get into long term flares around this age. If i see a couple days of something that looks pansy...i give ds9 ole, monolaurin, oreganol and garlic. All 4 at one time, only once a day. I also up the zinc for a while, though i am giving him an extra zinc about once a week. DS12 did not have mthfr mutation..i am guess neither do the other 2 boys....but they were not tested. I have been at his hard core for more than 3 years and doing other research and protocals for 7 years before that (when ds12 would remit with standard abx course). (i was spoiled in his complete remissions and prayed as he got close to 9years of age that it would continue but no such luck...maybe too many episodes). Give probiotics almost every night to ds9 but definitly at times of natural protocals. DS9 has not had the numerous episodes that ds12 has had and hopefully i will not have to go through all of this with him..and maybe that is why i am gettting some good response to the naturals for him. I continue protocal for a full week to 2 weeks after pans symptoms stop. Again, once these kids are triggered, though they may not be getting an actual infection(maybe he is just getting run down), the exposures are triggering him and i want to squelch it before he gets too run down and it does become an infection. i hope that explains what might help if you don't think it is a full blown, rampit infection. Maybe you could try something like this for you child if you are seeing a minor flare. Sorry for the soap box.

Just curious, has the person done this ivig? how did it go? If i can pick your brain a little on this, again if you are not directly involved you may not have the info. but,has this dr done this protocal before? do you know his success rate with this? does he do in the hospital does dr prescribe steroids with this protocal? Thanks in advance.

Thanks! I do wonder if dd9 is done with lyme treatment although she'll have to continue all the other supplement support. I don't feel that dd10 is, unless it's the heavy metals that are causing her current symptoms. I don't feel like I'm done with treatment yet. But that said, I don't think our homeopathic treatment would be causing gut issues but of course I don't really know. Maybe the cats claw could be causing issues, I don't know. We are treating her gut with her other treatments and working on her protein digestion, etc. I am trying to keep an open mind though to be sure I don't overlook anything! Thank you! Susan We are dealing with digestion or lack of for ds4.. Per blood test(covered by insurance)ds4 doesn't have any amino acids Oour Dan said it doesn't matter how much or what he eats, he cant break it down or absorb it. Again..i believe it is due to the steroids that where given to him 3 years ago, that created huge yeast problem that then wacked out out the aminos. Also per a member here, i might be investigateing lymes for him as i have been told that that might effect growth hormones. currently giving nystatin..trying to come off. giving some aminos. giving as much high protein/vitamin powders, drinks i can get in him giving occasaional papaya as enzyme, since they are chewable and taste is ok giving probitics a couple times a day, besides yogurt, found a 2 billion units at locak grocery store. i'm giving about 4-5 at a time. dont know if any of this relates to you...but am seeing alot of developmental delays really remitting.(not that anyone but myself or the teachers would notice) and some physical growth.

PS..i don't let ds12 have the strep strain at all. when ds12 was not in episode i would let him eat that type, so until then..only as a special treat dose he get to have that in food.. the other 2 are not in Pans right now so that does not affect them...when in episode everything is off limits.

Hey suzan...as i was reading my reply i'm not sure i got the complete gist across. Maybe she is done with treatment(again idk,,you are the mom and you will feel that direction more than i would, along with your drs) so, when you do further treatments..if you are actually done, maybe you are just further irritating the gut and that is what needs to be healed. just a theory. i hope that came across better.

I dont' buy any with the strep.T in it...why chance it? but to be honest i do let them have organic gogert type things and the occassional greek yogurt when i mix it in a smoothy i also try to rotate the probiotcs and sometimet that includes culturelle. jarrow 299v and others. Ds4 is a real pain.."i don't like that..that is weird". Tried the loose probis..but that takes so much to get the dose high...still trying to get to 100bill for him. it is easier to buy the expensive Ultimate flora..they come in 50bill 80bill etc.. again, the higher dose probiotics don't seem to have the strep strain. These are in the refrigeratated section of stores ..I try to open a whole capsule into a drink, but the booger can taste it. It is easier when i make a smoothie or something with a lot of flavor. sometime i try to put it in oatmeal once it cools off before i put it on the table..i hope most of it survives. I have heard, i think it is just a theory, that even if the probiotic is dead/old it might still have some effect?!?!?!?! maybe it acts like a puzzle piece and locks onto other microbe that attach to it...don't quote me on that one. also try to give like a candy treat some 1 bill to 2 bill probiotc chewables. these don't need to be refridgerated...Kroger grocery has a 2 billion unit and natures plus has a 1 bill item i found

Sorry , hit enter by accident. wanted to say i am still a novice to lymes. but what i do know is that even if you stopped treatment..that i would continue with detox and treating the gut.... i think that there is a lag with the gut...and when you consider all the years just my 2 cents... and maybe that is the final thing holding dd back? the gut is a slow healling entity...just remind me of that when i am panicking

Hey Suzan, it is nice to hear you are having some respit. i would agree with MT that when you start to treat again, that you might be seeing a herx. IDK

yes, yes, yes...i think worse than abx use! i give nystatin when doing a taper or burst. before i had a DAn or any of the main pans drs...ds4(who was 1 1/2 then and ds12 was 9 then and start of my/family altering PANS cronic infection episode going on more than 3 1/2 years{{sorry for the digression}}) Steroids were given to then ds1 due to myco p infection that dr dx as brhochial something was given to ds1 and he has had undetected yeast for years. Thus resulting in brain fog, slight language delay(as in can get the words out or express self properly, but sooo subtle) and lack of physical growth. the yeast is eating the nutrients. so he is in a chronic state. when we give him nystatin his expression is that of an old sole and very expressive, he also grows like a weed. Take him off nystatin, he holds the expressiveness but stops growing. several months later, reintroduce nystatin,, more leaps in learning and huge growth. He is still behind in both,,,growth mostly. Tryning to keep yeast at bay by limiting carbs..giving probiotics to sssssllllllooooowwwwwlllllly push back yeast and giving biotin to stop the process of conversion to yeast. trying so hard to get off and stay off of the nystatin..as that might let c.diff take over too, if not back filled with heavy probiotics.

just wanted to mention that we too have tried homeopathy and it did not work. BUT, that may be do to a mireade of other things including use of abx and wrong remedey. I am not patient enough to wait to see if something doen't work in a week and then give one more drop and wait a week, up to 2 drops wait another week..etc, as my son continued to tank. But i think a new trend may be happening with more homeopaths...that is if it is not the right rememdy, you should know w/i a day or 2 than up the dose or try a different rememdy. Don't quote me on that,,it's just what i'm seeing on some boards. HOmeopathy may be in our future, but not right now. Based on some ART testing i am on naturals only. I may be seeing some things changing but it has only been a month or so... i will update when i know for sure.

HI Wombat...i've seen you on the ts board. There is alot of good info here. The thing is too read and sift through it all. Daunting. I still don't always make the connections. Or once i do i cant seem to remember how i got there. anyway, i find it interesting that you have a similar connection. it is nice that as an adult you can vocalize what you are experiencing and opposed to just witnessing and pulling the info from the child w/o trying to feed them the info that you are looking for,,,ie not to leed the witness. Someone on here once talked about abdominal migranes???? i think that really helped them as a key to getting remssion or close to it, i think, but i don't remember the whole gist. Put that in the search section see if it pulls that up. HOw did you figure out you had adominal migranes? yes, the gut seems to be more than saying give probiotic, detox, get rid of the parasites, treat candida, are there enough amino acids, is the ph to high or low, etc..its the sum of it all. But as i procede, the hard part is the gut is a SLOW healing entity. So you continue to treat and maintain all the parts and see if you are missing any key/other elements. ANd to measure healing over months, not days and weeks, especially in the area of the gut. Even though my 2 younger are in remision...i contune probiotics, and make sure the have bowel movements. That was a big miss step for my first child and i believe that is also the case of my dh who has pans. He is an adult that used to get strep severalt times a year for a known 30yrs or more and i am certain, that not until the last 10, were probiotcs even thought of..he does have terrible candida. And that is supposedly a 2yrs journey to fix.

My DD has "ticced" since age 6 (she is now 20) and we never knew about pANDAS till she was about 15-16. What I didn't know till very recently and through the guidance of our AMAZING psychologist, was the tic is a compulsion (in her any way)Surprising that most times our kids don't tell us what's going on in their head because to them it's a normal state. So the tics increase as she is having bad thoughts. She too had vocal tics which thankfully are not here now. So tics could be the visible symptom of OCD. Also, from our DAN, many of our kids do not make enough stomach acid and this sets off a bad chain of evens. First, they do not digest fully so you see refulux as the stomach acid jumps up, trying to hit the food. Also, we do not get the needed minerals from food and therefor can not make needed brain neurotransmitters needed for good mental health (zinc, mag.....)lastly undigested food circulating throughout the body sets off histamine which sees these food chunks as enemies, putting the body in an opiate like state, which in essence, makes them high. Poor digestion is the main cause of consistent nausea. Sooooo, the treatment is a supplement called Betaine. One capsule is taken with each meal for about 2 weeks. If no burning/ hot feeling is detected, the dose is increased to 2 per meal. After awhile, it teaches the stomach to produce more stomach acid. This higher amount is also a lower Ph. The benefit of lower Ph is that yeast and parasites can no longer thrive in the GI tract, causing their own problems. After awhile, when the stomach has started to increase the stomach acid, it will begin to feel hot when ingesting 2 capsules and you reduce to dose to one. When heat begins to accompany that dose, you no longer need them. This also assists in digesting medication well enough. Nancy Hey Nancy, we must have been typing at the same time. I forgot about the Betaine. i know you are do gf...i forget, are you doing df too?. God such a hard road..we did gfdf for 3 months..even checked things like ketchup and no carmels or carmel coloring, etc...we almost starved to death and the food bills were sooooo expensive. Oh to wrap my head around that again..i am going to need some real support.

YOur saying that your ds is tic free right now,,right? what i was thinking for your ds is that maybe he purged the problem out of his system by throwing it up and the stomach accids became so high that the rest was elimated out of the bowels. So maybe he had a parasite, strep in the gut, other? Maybe the upping of the tics was a herx prior to the the final elimination? yes it is weird for my ds.. i am constantly searching what is going on with his g.i. as mentioned in a post to fcefxr..when i put ds on the parasite cleanse he responds sooooo well. it treats parasites and candida and detoxs...but you are not suppose to stay on it more than 3 weeks and then you can redo a couple times, a few weeks apart. though i think ds would have been a swedo poster child with strep, tic onset and then standard course of abx(ie 10days) administerd, i would get full 100% remission w/i weeks. but do to the numberous times of onsets..did it become chronic, autoimmune, or is his gi so messed up that that is the real problem? The first of the many years of onsets, i did not give him probiotcs as i did not know. So i was probably, slowing creating a systemic yeast infection, which then cascades into other systems in the body becoming disfunctional. The healthforce prodcut also conatins milk thistle which increases glutithione....so is it that? I think the concentratinons in it are higher than we might administer on our own. When at full dose ds takes 8 pills at one time. A full adult would take 10. i have researched that product and tried to seperate out the components to see what is the miracle in it for him..i just can't seem to pin it down. Maybe he has systemic parasites, candida, and needs glutithione(all three) and that is why i always see such postive results with that one product. Like alot of parents here...still searching for his real,current trigger. The trigger one time might not be the same the next. Now in a hyper senstive state, almost everything can be a trigger! Ds has not had strep in 4 years. It had gotten to the point that i knew he had strep as he would tic, with no signs of illness. Tics even came prior to culturing positive. would have to go back in a few days later to reswab and then come up pos. Then we would get the abx and ds would remit 100%. But of course the F(*&^%% dr's said i was crazy for all the years i kept telling them that there was this correlation. Please, i still get so angry. And again, not something that everyone agrees with, but imho, no ts gene. You would think they would have found it by now. It is all some disregulation within the immune system. Now you have to go find it. This is based on observation of my children, 2 of 3 in remission, a DH who does better on abx and getting tonsils out(next going to treat extreme candida for him), Knowing several people with sudden onset ts..know a few who had it go away in teens and come back as an adult after stress, and illness.

mom of pans ticcers here. ds, when exposed to clorine can increase his tics..depending on status of his current immune condition. ingesting clorine will further disregualte your digestive tract and therefore immune system..and will either reamin the same or increase the condtion. when ds throws up...he stops ticcing. ie..if he is thowing up one day he doesn't tic that day.. if he throws up for 2 days...no tics those 2 days So for my ds, i see a direct correlation between tics and his digestive tract, immune system.

ok....all clear!! bring it on!!!

organic Kale is available at whole foods

Thanks for the post!

Amen Sista!!!! JoB Well done!!! I like who your dd is! And i can feel her personality and it mimics alot of these kids. It will make them the more compassionate citizens of this planet. Thank you for Sharing.

is your son neg igg and igm my igg is very high. igm neg...i am currently being treated for myco p(chronic i believe)..i have a cough that comes and goes. Probably depending on the state of my immune system, as in letting the myco p take over, vs my system keeping myco p suppressed. the more i am being treated the more consistant my cough is(herx?) i am not the pan parent...my hubby has pans. it feels like something is stuck in my trachia. i personally don't believe you need the cough to have myco p. It can express itself different in differne people. a cough could be a tic for pans kids