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Fixit

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  1. Read a few replies and i relate to all of them. Cant' be in the room with them...even with the boys who are ok. Being on DEFCON 5 all the time has done me in.
  2. Not really relevant... I would just drop the P and call it ANDAS/ANds/itands....what have you. i just wonder if there was this suscepptiblity that was never triggered. or if the perfect storm just created the susceptiblity and then the trigger was pulled. i wonder if the gereneral population continues with bad diets/mutiple vacines/polution..how much more of this we will see. Not sure how true this story is, but some connection is being made that people(adults) are coming down with tics(ts) because of the meter readers that are being installed for remote reads. Especilly if they are by the bedroome. THe things that utility companies are installing...again idk. But i agree with mama. Unless there are details that are missing, as i am sure you are in a panic. Did they try abx for at least a month to see if there was any change? It might be good that you are able to line up ivig quickly as he is a young adult...nip it in the bud.(i have not pulled the ivig trigger for ds12) But i would think giving the abx a little time might be in order before ivig. not sure if you have been around this board much..i am not a doc...just thinking out loud. May this be a quick journey for you and your family!!!
  3. are you giving the right form. we just started using mag taurate again..my ds is about 105-110 and we are currently using 125mg...that is the dosage in each capsule. sorry just remembered..per recent introduction we are only giving 1/2 a capsule currently... i put the firs half in a shot glass with some other things...and leave the rest in the capsule and give it the next day. for what its worth.
  4. Yes...things did seem a bit better. I was kinda hoping the warts were the answer since i did see some improvement But since i am having a hard time getting this DS to 100%, there are flares with every tooth loss, yeast infection, allergy season, etc. When my kids are 100%, teeth, colds etc, food colors(ie at freinds houses), don't affect them, not even pollens, until they are sent into overload. I suspect the snot lets this bread and then wha-la an infection. In episode, the load is too much, inflamation too high and i can tell something is even worse!!! For ds12 we just realized we he has a pretty high viral laod, and undoubtedly some gut dysbiosis. I also wonder, if you get onc infection out of the way, if the other doesn't become opportunistic? The thuja was a topical ointment. We still keep it here. My dr now perscribes it for his other patients he told me. Intersestingly, here in the atlanta area, about 2-3 months ago, there is an ointment being advertised for skin tags(i think at rite aid or something like that)...i don't think they metnion warts...and guess what the magic ingredient they mentin on the commercial..begins with th, the middle has a u and ends in ja! THis is the one we have.(Boiron Thuja Ointment) I know of a couple of people who were prescribe thuja as thier homeopathic remedy for pandas and had some success. I don't think they got the dosing down though. I think dosing is the key with the homeopathic stuff and you really need your finger on the pulse. I am not there yet..
  5. SF, i am very curious if you have tried or started l-glutmaine. I was reading about how it helps the intestines and ordered some. And upon rereading the link i have earlier in this thread by amy yasko..(i can't seem to find the exact reference..so maybe it was another article). glutamine converts to glutamate(bad thing) found these 2 though http://www.ncbi.nlm.nih.gov/pubmed/15052410 http://articles.mercola.com/sites/articles/archive/2004/05/01/glutamine.aspx Not saying you are talking about high doses. DS did not respond well to Nac..or at minimum no effect. Currently we are giving a fork of saurkruat a couple times a week to help replenish some varying microbes. But since we are sal free currently, I have to watch the fermented stuff. But as long as i dont give too much i think he will be fine. I wonder if giving a "dash" fo glutamine once a week would just help those 4 or 5 cells. Then the next time it helps 4 or 5 other cells in the intestine, without loading it up and getting the load to the brain. In dosing, I think that 1 a day system isnt' necessary even for healthy people. Rotating what the body needs and then backing away. I have personally always done that. Unfortunately it is more difficult to get a read on kids, as they may not be as in tune with their bodies, though some are. ALso, kids will do what their parents tell them and take stuff not realizing maybe they should articulate that something isn't right or the different wonkiness that supplements and medicines are can give them.(even if not listed as a side effect) But as I think about it. One drop of GSE started screeches that lasted untill we hit it with vanco. So who know?
  6. Ds had warts on his knees for 2 years. Interestingly once they were gone i realize they started, i think, the same exact time as this long episode. I think i was the perfect storm where he got everything at once and i was looking for was strep(idiot). Anyway we tried every thing to get them to go away. If i am correct i think we were on tagamenet for other reasons, that i did seem to soften his pandas condition at the time. but we went off as sometimes you have to stop and reevaluate. It got to the point where his knee looked like a colyflower(sp). The dr was at his end after 2 years(just talking about warts here) Finally i went and got homeopathic THuja ointment. Within 10 days or so you could tell something was happening. by a month i was sure they were getting better. at that point i showed the doc since we were there every week. By 2 months almost gone and definitly gone in 3 months(the possilbe scar tissue and wanting to make sure they were good an gone). NOw he has lovely knees!
  7. This is my ds also. But i wonder even if ds isn't "snotty", though i think i hear him sucking it in once in a while if you know what i mean(yuck)(i also think it gets stuck and doesn't drain) wouldn't it seem logical that that there is a mucos build up in the stomach/intestines. I have no idea if i am right. Just thinking it through. Then other stuff have a breeding ground. Or maybe not breeding, but since there is a mucos, other aspects of the gut are not running to their full potential? I agree, in that i am concerned about stripping the gut of things it needs. I'm sure the abx's are not helping in that regard. So i wonder if keeping some mucos is beneficial in that area. We are doing much better since avoiding MOST Salicylates. Ginger would concern me on that aspect(currently anyway). I think that is whay i saw no benefit with Quercitin(sals). Theanine/gaba seemed stimulatory also..go figure. But may retry as we are sal free and slowly (per your lead LLM, thanks) attempting in our way a kpu protocal. Like Taurine! I will have to look at some of the other things you mentioned here. DS has NO GUT issues, so to speak. But just reitterating, sal free seems to be doing something, and when he vomits he is ticless, and he does very well on one particular parasite cleanse that also treats yeast and detoxes. So...SOMETHING is going on with the gut. I just cant figure it out. I am not trying to steal the thread. Just posting other questions in how i see things relating to my ds and our experience. Honestly, I truly don't understand nearly the amount i really need too. Always interested in any thoughts or info you have!!!
  8. I keep coming back to this article by amy yasko for many reasons. There is alot more info than just about NAC I can't say nac helped.(it was just the form N-Acetyl Cysteine) and i did add Vit C. DS is blood type O and MULTIPLE strep infections. NOt to say that maybe it might help at some later point, once other aspects of the gut are healed/being assisted. http://gordonresearch.com/articles_autism/role_of_excitotoxins.html Blood Type/Streptococcal Infection The A-B-O system for blood typing is dependent on the blood group antigens that are expressed on the outer surface of an individuals' red blood cells. Those with blood type A have NAC-gal (n-acetyl galactosamine) as the predominant blood group antigen, and those with type B have galactose as their primary antigen. Those with blood type O have fucose as a predominant antigenic determinant on their red blood cells. In addition, to a lesser extent the NAC-glu (n-acetyl glucosamine) antigen would be accessible to the immune system in those with blood type O due to the limited carbohydrate antigen on the surface of type O red blood cells. It is necessary for the body to discern the difference between self and non-self, and to prevent the immune system from attacking self. As a consequence of this "tolerance" to self, those with blood type O would have a higher tolerance to NAC-glu, and would not have as high a natural tolerance to NAC-gal and galactose as would those with blood types of A or B. Similarly, those with blood type A would have a higher "self-tolerance" to NAC-gal. The major carbohydrate antigenic determinants on the surface of the streptococcus bacteria are predominantly NAC-glu and NAC-gal. As a consequence, persons with blood type O and type A would have an initial greater natural tolerance to infection from streptococcal bacteria. After repeated exposure to the streptococcus bacterium, an immune response would finally be mounted, and targeted against the antigenic determinants on the bacterium. When this happens the immune cells of the body inadvertently launch an autoimmune attack upon body tissue with antigenic determinants that are similar to the antigen on the surface of the streptococci. This reaction to the NAC-glu and NAC-gal on the surface of the streptococci could also lead to an autoimmune type reaction against the NAC-glu/gal in the GI tract. This process has been recognized since the middle 1980's and is known as molecular mimicry. The excessive shedding of NAC-glu and NAC-gal, otherwise referred to as GAG has been described and well characterized by others. Suffice to say that the shedding of GAGs in the GI tract is enhanced with immune activation and inflammation. Following infection and/or inflammation, the body would need to replace GAGs that have been shed, as well as to sulfate them. If there is a sulfur deficiency in the body, this would lead to undersulfated GAGs in the GI tract along with the deficiency of other sulfur related proteins in the body. Nitric oxide has been shown to inhibit sulfation of GAGs. High levels of nitric oxide are a consequence of excitotoxin damage. Generally, bacteria elicit a B cell mediated immune response, and viruses elicit a T cell mediated immune response. However, a large number of extracellular toxins are elaborated by streptoccocci, all of which have the ability to nonspecifically stimulate T cells. Therefore once an immune response is mounted against streptococcus it would involve both T cell and B cells resulting in a major inflammatory reaction. One particular extracellular enzyme produced by streptococcus is a sulfhydryl protease. This protease is capable of cleaving sulfhydryl groups and may lead to a deficiency of available sulfur containing moieties in the body following streptococcal infection. These sulfhydryl groups are involved in the binding and elimination of heavy metals in the body. Streptococcal infection is also known to lead to elevated levels of the inflammatory cytokines NFKB and TNF alpha. In addition, the level of TNF alpha is inversely correlated with glutathione levels. Consequently, high TNF alpha levels as a result of streptococcal infection would result in decreases in glutathione levels. Streptococcal infection is also associated with a wide variety of behavioral disturbances. High levels of TNF alpha (as a result of streptococcal infection) have been implicated in Tourettes syndrome, facial tics, obsessive compulsive behavior, and schizophrenia. On a related note, lithium (the most popular prescription drug for treating the mood swings associated with manic, or bipolar depression) has been demonstrated to act by protecting the brain from over stimulation by glutamate. Excessive levels of glutamate have also been implicated in drug craving and in addictive behavior. Consequently, the net results of streptococcal infection are depletion of Vitamin K levels, decreased glutathione levels, decreased sulfhydryl protein levels, over stimulation of the immune system, increased TNF alpha levels (which trigger OCD, facial tics, etc.), potential autoimmune responses and inflammatory reactions against the GAGs in the GI tract.
  9. We also saw a little improvement with tagament. We may revisit that in the future. I don't want to confuse our strategy at the moment. Here is the link to a sal-free diet/ingredients. But they are also called Guier's (sorry for bold type ...sent to someone else to help me understand, so used large font) I am also interested if anyone has any thoughts on this or can translate better. I've tred to understand the Guaifenesin Connection for more than a month now. Per another mom, they heard that using robitussin, if you can't get pregnant, might help. It thins out the mucus everywhere i guess and lets the little swimmers make it to the egg better. And it did work. So i know of one person that this is evidenced by. GUAI’S USE THAT MEDICINE TO THIN OUT THE MUCOSA???? THIS IS WHAT I READ INTO THIS SITE… SALS ARE A NATURAL PESTICIDE. SO THEY BLOCK THE BUGS FROM EATING THEM…AS THE FRUIT GETS OLDER..RIPENS, THE SALS DETERIOATE AND THE BUGS ARE ABLE TO GET TO THE FRUIT. SO SALS BLOCK (ENZYMES, AMINOS, BACTERIA…I DON’T KNOW…JUST BRAIN STORMING)(RIPE FRUIT HAS LESS SALICYLATES) IN THE GUT THEY ARE BLOCKING ABSORBTION, I GUESS, AND I GUESS WOULD ALSO LEAD TO BAD DIGESTION. BUT ONCE THEY GET TO THE INTESTINES SOMEWHERE, THE SALS ARE LESS POTENT/EFFECTIVE? BUT NOW YOU HAVE BACK UP OR UNBOTTLENECKING OF METHLYIZATION? http://www.psha-inc.com/guai-support/sf/Sal-Free/About_Salicylates.htm#AvoidTheseSynonyms I might try this at some point. Especially if someone can give me some real theory behind this or had a personal experience using this protocal. This is about the umpteenth time I've come fibromyalgia in searching for ds' puzzle piece.
  10. vanco..if remember right my Dan also orders antifungal with that as vanco stays in the gut. once there is open space any other available organism will try to populate that space.... needless to say alot of probiotics to fill in..alot of pearls too. vanco helped the screeches several times for ds... we may have to go there again...but we are not nearly as bad as we have been in past this time. trying to hold off till necessary. as one thing comes into balance another goes out. got to run myself...but i was looking at some other things that are gut related along the line of clariton... got to find link and will post later after this busy week...if i remember Not sure what aspect of gut you are trying to heal, so that may play a part in it... high acidity, parasites again, mucus, mucosa, vialia(sp) inflamtiaon would obvisouly go with any of these, including food intolereances. But i'm sure you know more about that stuff than i do...just throwing thoughts out there fot others to brain storm. Best wishes.
  11. Dealing with this for ds12 3 1/2 yrs. other 2 are in remission.(all ticcers as main/sole possibly condition/other possible conditions if counted are so insignificant/to me) But ds has had more than a dozen strep infections with paperwork to prove infection..followed by abx and remission. Per Bonnie G..and amy yasko..and maybe a couple of others...there is a belief that step does something to the gut. some other domino effect occurs. Recently started a salicylate free diet, with additinal restrictions from the failsafe diet and we have seen improvement. That is comboed with adding real probablity that kpu is issue, even if only minorly. It is not just gfdf...mind you i do let him have whole wheat a couple days a week..and cheese a couple days a week. we may go GAps, but we are in a better place than we were a month ago. Also treating high viral load, mycop, lymes. after so many episodes i am sure that strep has done something to his digestive system...that will take a long time to heal, even though as i write this, understanding what i am saying, i am upset daily that today is not the day that it stopped.(sorry to brag but we too used to get full remission with a 10course of abx) please remind me when i post asking why it's taking so long.(but we are going to heal in a month i am sure ) ps when he throws up he doesnt' tic that day/or for the hours he is vomiting.. steroid burst had a nice 3 day subsidance and a taper was like a Christmas present that was taken away
  12. yes very helpful stuff. this item is white. he was taking alinia which had a yellow coating that he reacted too. it compounds yellow but the coating is something else and per an autism site i scraped it off and he does better on it.
  13. ok, hadn't thought of that. a/o a month ago or so, i sneak 2 charcoal capsules in with his lunch...that is all i can do during the week. I used to do it when he cam home..but that put everything way off into the night. on the weekends i do get to give an internal drawing formuala that does contain volcanic clay, zeolite, and some other stuff. But again that is only 1 time, around noon. we are not doing an antifugal currently. i am hoping the nightly probiotics and the biotin will hold enough for awhile. these along with the binders were in place prior to starting the anti-viral.
  14. Thanks SF. Definitely helps to hear this. DS hhv6 is 20 times higher than normal..so pretty high. Also recently tested pos for Coxsackies too. A mom just contacted me and suggested that maybe it is him feeling better! He is rather a lathergic, shlumpy, lump. Tics overall are ok...when the hyperness kicks in the tics/more complusiony at this point, SEEM up, or maybe they are more intense?.
  15. DS is so hyper since starting this. Therefore trickle of makeing the tics seem worse...i think!?!?! IE..yesterday he was wrestling his younger brothers any time our heads were turned. Its funny as i type that statement(i kinda chuckled)..but it's not funny when you hear thunking, banging, and of course the inevitable crying, screaming! list of ingredients Valtrex is offered in 500 mg and 1 gram tablets, the active ingredient being valacyclovir hydrochloride, with the inactive ingredients carnauba wax, colloidal silicon dioxide, crospovidone, FD&C Blue No. 2 Lake, hypromellose, magnesium stearate, microcrystalline cellulose, polyethylene glycol, polysorbate 80, povidone, and titanium dioxide.[8] I'm guessing its the hydrocloride. as a ticcer B6 in the form (as Pyridoxine Hydrochloride) is stimulatory. P5P needed for adhd/ticcer types. That is why is swtiched from CORE, to giving most of the ingredients in single supplement form. Any thoughts. Should i ride it out. I did not give it to him this morning, as i do not want a call from the principles office. I will reintroduce tonight as we are on our way to one of his DRs and wont be in school the next couple of days. Is there an alternative form of this or can it compounded differently? Again, is this a herx?
  16. This moring was beautiful. I gave first dose of this at 12pm ish. About 1;30-2 we are seeing a ramp up in tics. IT is easier to see an effect when the house isn't on fire. Has anyone had worsening of symptoms by addressing hhv6 with this or other antiviral? If so, how long did it last? Did you push through? Scheduled detox with drawing formula in about 20 minutes...maybe that will take the edge off. Cant believe i never checked hhv6 before. All this time i thought we checked it. from my understanding per a dr. 1:8 indicates prior infection 1:20 could indicate current infection ds' is 1:160 I don't know if has ever been higher. We are using artiminisin 4 days on 3 off for almost 6 months now. He is also pos for coxsackies and still pos myco.p. igg. here is an interesting link http://hhv6.blogspot.com/ Jun 25, 2012 – Is a form of ASFV called HHV-6 affecting the eyes of Nodding Disease Victims? nvest Ophthalmol ... clinical pathology of the central nervous system, and the most ..... difference--between AIDS and CFIDS so you can sleep at ... This is posted in the link below!!! Is nodding disease in Uganda showing up in America as the Tourette's-like syndrome? https://noddingdisease.jottit.com/ Thanks for any info!
  17. I tried ds on quercitin a few times and thought he seemed worse. Not crazy worse, but worse. we have also done curcumin and Enhansa... I could not figure out why he was getting worse over a period of time. One of the recent things i decided to address( that most of pandas, dans, immunologists, DRs and few other people i have mentioned it to)is salicylates. Ds mouth itches with most fruits. so drs said don't eat or dont eat if during allergy season. But even if i get it past his mouth, what is it doing interanally? So we have gone sal free. TURMeric and querctin(which i seem to find comes from fruit and vegies...i think mostly apples) were bad mojo for him. you may want to call the company and find out where the quercitin comes from. FAva beans are high is sals. We are following a very strict diet. I suspect kpu problem,,,should know soon. This ties into a coulpe other things mentioned before, not knew info, but more of how these conditions, meth problems come together. Ds itches to things that are even on the low end of the spectrum. We are flowing, to the best of our ability, the failsafe diet.
  18. I agree completey!!!! Well said. We have been doing more gut modality/dibiosis/methylization/inflammation protocal. It's not just gf/cf that needs to be considered. Along with viral/infection load. Alot of inprovment in a few weeks. But things were bad, and i am being pretty hard core.
  19. I have no real input, but i heard of a Dr(i dont' remember who, or who told me) that supposedly treats PANDAS by giving ivig for 5 days. But either gives a minimum of 4-8 treatments, (and sorry for being so vague, as i have tried to find out who this was to figure out the theory) and i want to say either does it every week in a row, or one every month...and supposedly believes this way is curative...IDK. I would love to find out who this is and talk to them. I think you may need to really look at methylization to have better results with some protocals you my be attempting. i wish i had more to offer, but maybe these open some other thoughts for you.
  20. OH MMc, i wish it were a magic bullet. i am writing down what i am doing. I've been trying to stalk a couple of moms that i think might have a realivant piece and i have a couple more dr's i am talking to, in order to continue this exhasperating journey toward healing. We did pex with no avail either. Something is in the gut!!!! Or something has happened to the gut, because of multiple strep infections. His tics progressed from a simple tic, to a motor after 6-9 strep infections, with comlplete remission in between. Then from a single motor, to gross, complex, chaining, motors and vocals after 4-5 more infections that also had complete remission between them. With that, his allergies have gotten way worse every year, NOT BETTER. I am going to post what is happening here once i can write it up in a coherent sentence. Again there isn't any earth shattering info going on. Just some pieces think i have and I wonder if they all connect. And even if i am on the right path can i get him to 100% and live something closer to a normal life. I feel like i am trying to heal a subset of crohn's disease. We are living a very restrictive life right now. Remember, my other 2 boys are triggered as well, but in remission. But both of them have only been triggered 1-3 times. By their perspective ages, DS12 had been trigger 6-14 times.(no one would listen about the strep/tic correlation that i was insisting was there, and the new thinking by science of keeping tonsils just became popular and we did not have them removed until he was 10ish, should have done it when he was 5)
  21. I weep as I read this. I am so sorry. I need to state that even if the tics do not respond to ivig that does not negate the fact that they are triggerd by infection. Just like others who are treating ocd with ivig, I cannot say that i am reading 100% recovery with that. That they either need multiple ivigs or other interventions and medications. And even with he added side items are not 100%. So to say if ivig is not recovering the tics, it is not infection driven is a big mislead. As some do get recovery of tics from ivig. UNfortunately, i think it also triggers some other path for some ticcers, or those who have had Multiple or on going infections. I wanted to post as my ds was almost house bound a couple of weeks ago from progressive worsening. I am not quite ready to post everything that i am doing, as i have not formulated all of my thoughts, connections and some theories(not that they are orginal either). BUt we are miles away from where we were a few weeks ago. Don't quote me on this..but he was realtively a 9 or wosrse on the tic scale, to roughly a 3 or better, give or take. The only reason i am posting this statement is because it pains me(still crying)to know what you and your children are going through. NOt saying i am still not going through it too. I do not think i have all the answers for my ds yet, but i might have some correlations for ticcers. These infections have triggered some other cascade in the body, not just to the basal gangilia, but a larger disbiosis in the gut. From finally listening to MY gUt, adding info from llm, Bonnie Grimaldi, fcefxr, stephanie2, Dr T. theories, SFmom, listening the clues that work from other people that fit my lead/gut, that make sense in my mind and some other offline friends, DS is in a much better place. I will always be fighting for full recovery. I can remember him without tics. I am still shocked every morning that he has them, everytime he walks in the door and they are still not gone, when i talk to him and he hasn't had a tic in 5 minutes and one happens, I just can't believe it. I have an oh-wow they are still there reaction. He is not his tics. I know stopping them is do-able! I am still researching as most of us are, whether we are trying to squelch rages, ocd, ts, etc...
  22. Thanks for sharing. Wonderful to see the support and the acknowledgement.
  23. Another panda mom and i were just discussing this, this week. The exact eye thing that both of our boys seem to have in common, besides a few other things. Anyway, because of that conversation i started ds on eye exercises again that i learned from Brain Balance. Another thing that helped ds early on was an overlay. The concept is that the glare from the white paper, and/or the flourescent lights creates a problem and makes it difficulat to track. The fluency with the overlay was amazing. supposedly different people need different colors, red, blue, green etc. I notice it was more comfortable for myself to read with it too, especially when you are trying to read a glossy magazine. Ds eyes seem better than when he was younger, but i seemed to have noticed a bit of laziness again since a major flare. i forwarded this thread to my friend. i might check into at some point too, if needed.
  24. interesting, i'm glad things are looking up
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