Chemar

that would probably be the monolaurin? I am assuming by silver you mean Colloidal Silver? The brand for that that was recommended to us when my son was initially dx with the epstein barr virus was Sovereign Silver

Hi and welcome yes it is very normal in TS to have tics stop when asleep and yes, many patients seem to be fine when active, but tic more when they need to be sitting still

sf mom there are also doctors telling us that 80% of TS is caused by TMJ problems my son is 20yo with genetic TS and doing just great on his natural treatments, thanks! the whole purpose of ACN/Latitudes has always been to encourage members to share our personal experiences while being very mindful of the fact that many who come here may manifest symptoms that are related to root causes that may be very different from our own. it would be irresponsible for me not to share the potential problems that we have personally encountered with steroids in people with TS, and I always qualify that this may be a problem for some not all it is great that you feel you are on the right path, and good that you share it. But that does not preclude someone on a different path from sharing their info as well

Hi the other poster may have info for you re mycoplasma and steroids. My caution is related to Tourette Syndrome specifically, although i have also heard that caution related to Lyme disease http://www.lymeinfo.net/pain.html

Hi and welcome we have some members here who do use NAET treatment methods, and have found it helpful, but I dont believe anyone has found tics eliminated with this.

yes, I am really relieved to see more info being posted on the caution needed with these steroid bursts! I know they can be very beneficial to some PANDAS kids, but it has alarmed to me read that perhaps some of the physicians are using these as "diagnostic" when there is the risk of them making things worse for those with TS and some of these other infections! and also to see them being recommended here without knowing the full history of the person

you could try the list pinned to the TS forum http://www.latitudes.org/forums/index.php?showtopic=565 you could also try googling the term for your area. sometimes the term alternative physcician can bring up integrative docs too our acupuncture therapist recommended the integrative GP we used and in turn they recommended the integrative pediatrician. the good thing re integrative docs is that because they are conventionally licensed, most insurance policies will cover them

we only used l-carnitine not acetyl, tho i know some people prefer the latter my son only used it as needed daily ie when the vocals were waxing, he used it off and on for about a year

hi I have quite a lot of posts here about tourettic OCD so if you do a search for the term under my user name you should find them all my son's tourettic ocd has always been more bothersome to him than just the tics or "regular" OCD symptoms you can read more about what has helped him for that in my signature link PANDAS refers to illness that can include tics and OCD related to strep infections. there is also a condition called PITAND where the tics and OCD may be related to other infections by bacteria, viruses, fungus like candida etc. es[ecially if f you have a history of strep, or other infections, it is definitely worth checking into the PANDAS forum has more info on it altho many there seem to use antibiotics etc to treat it http://www.latitudes.org/forums/index.php?showforum=17

we have always used a combination of integrative physicians (conventionally trained MDs or DOs who are also specialized in alternative medicine) as well as naturopaths and other alternative healthcare practitioners (homeopath, acupuncture, biofeedback, radiogenics etc). When we began the natural route, we had both an integrative pediatrician as well as an integrative GP never have used a DAN doc the psychotic effects we noticed was self injurious OCD and irrational intense rages etc. he also had very dark moods, with intense depression and suicidal thoughts it was far worse when he was on the combination of haldol and luvox, but even after the haldol was weaned off, it was clear that the luvox was having negative effects

Jules we only ever use natural probiotics like plain kefir and yoghurt (must be real cultured yoghurt, not this artificial store stuff) epsom salts footbaths have remarkable detox ability too if by oxygen therapy you mean HBOT(hyperbaric oxygen therapy), I have heard some very good reports on that

Hi my son doesnt have PANDAS but does have TS with OCD his OCD has always been the most bothersome aspect of his symptoms we did try SSRI meds in the beginning (2000) but after a year it was very clear that the side effects he was having were far worse than the OCD symptoms we were trying to treat. IMHO the SSRIs "zombied" him and his natural humor, artistic and musical talents were totally damped we also feel that in particular the Luvox was inducing psychotic side effects with help from a physician, we weaned him off all meds and began more natural ways to boost his serotonin (SSRIs do it by preventing serotonin uptake and so increasing its availability) We have successfully used supplements like Inositol, 5HTP, methionine, samE, st johns wort (not together!! and never to be used along with SSRI meds!!!!!!!!) when his OCD was very severe, the 5HTP @ 50mg each night was a real help he currently takes samE and Inositol and his OCD is totally subdued when his anxiety was very high, we found short term use of low dose GABA very helpful I know that the pathways at work for OCD in a PANDAS child are likely different from a child with tourettic OCD, but the concerns over SSRIs in young people are very real, nomatter the underlying illness. Even the FDA now has warnings on most SSRIs related to their use in youngsters

Hi jens my son had much benefit from low dose (50mg/nightly) 5HTP for his OCD tho I must say we didnt notice it specifically reducing tics . there is caution tho in using 5HTP as some people do react negatively to it. For them, tryptophan is often a better choice, tho again, some people just do not tolerate either very well altho my son used the 5HTP with success some years ago, when he tried it again recently it had a negative effect on him (made him edgy, restless and anxious rather than relaxed and calm) so one can also react differently to it at different stages, probably all related to the body's own biochemistry

Hi Jules sorry you are having to deal with all the problems intensifying as you know, I am not a big fan of longterm antibiotics and prefer to tackle infections via more natural ways. but that doesnt help with where you are at now. it may be that due to her sensitive reactions, you should rather just focus on one thing at a time. If the infections are severe and you feel you need to continue on the antibiotics then maybe just try to keep the yeast issues as much controlled as possible by careful diet and do the candida eradication after the antibiotics are over sometimes doing too much at the same time can put too much strain on the system, especially in very young kids i know acupuncture has always really helped my son with any detox stuff but not sure if your little one would handle it, even tho there is no pain with the needles

oooh I am not so sure it is wise to take that much taurine, especially for a child we have reports on this forum of taurine having negative effects for some people and there are some indications that it can have side effects in large doses too http://www.ehow.com/about_4685859_side-effects-taurine.html iHerb suggests safety tests have only gone up to 3 gm daily http://healthlibrary.epnet.com/GetContent....;chunkiid=21793 our physician told us not to go above 500mg a day when my son was on it it is very beneficial, but as with all things, taking too much is not a good idea and doesnt necessarily help more

sorry yes I did misunderstand what you were talking about as it sounded like you were suggesting that using natural means to detox was too slow and that one should instead use meds etc. I think what Lisa was saying was that her child has problems with some supps due to his specific underlying conditions eg the high histamine when those situations occur one does have to approach things more carefully IMO as trying to fix one thing can often aggravate another and so end up making things worse overall a step at a time is sometimes better than trying to run the mile in a minute!

I just do have to mention again that *IF* there may be Tourette Syndrome then the steroid burst *may* make things worse we know this from personal experience, and also anecdotal reports from others. Not saying this will be the case with everyone but it can sometimes explain why things get worse people who have TS should be VERY CAUTIOUS about ever using any type of steroids

Fixit.. maybe I am misunderstanding what you are saying but.I totally disagree with that concept you get "die off" as well with antibiotics PLUS a whole lot of potential other long term stuff like mitochondrial damage etc. I was given clindamycin once and was sick for months and months from it! my son had a brief die off when we had him on the initial candida eradication diet and supps (about a week) and then was ok...so there is no "bucket dripping all his life" ?? in fact, whenever he now does the candida spit test he shows clear so his natural protocol is working, with no potentially dangerous side effects like with the heavy meds! dont forget when my son was first diagnosed we tried the "big guns" route with meds and ended up with more than we started with thanks to the horrible side effects re the testing for vitamins, minerals etc here is some helpful info from the sticky thread http://www.latitudes.org/forums/index.php?...55&hl=tests

abbe I notice some of your posts may be glitching try just using the ADD REPLY button or the REPLY when you want to quote i have noticed the quote button does odd things sometimes

hi we used it when my son was 12yo at 500 mg daily I dont remember his exact weight at the time

no, olive oil is not the same as olive leaf extract...the oil is from the olive fruit. olive oil is very healthy but it is the extract from the leaves that kills viruses, bacteria, fingus etc oil of oregano is a very good natural antibiotic (tho very strong!! dont ever try to take it plain as it will burn your mouth!) but I have heard that monolaurin ie the lauric acid extract from coconuts is superior when it comes to stubborn microbes, which mycoplasma is coconut oil has some lauric acid in it so always good but the monolaurin capsules are what we use (made by cardiovascular research, I get ours from The Vitamin Shoppe I have seen some info that alternative researchers are even investigating monolaurin for use against AID/HIV we use coconut milk too re the toothbrushes..we usually use fresh diluted hydrogen peroxide every few days and yes, we leave the toothbrushes in the solution all the time

my understanding is that you can use both the probiotics and something like candida clear while on antibiotics, but you should probably check with your doctor on any possible interactions with the ingredients just be sure to give probiotics 3+ hrs after the antibiotic as otherwise the antibiotic will kill the probiotic too

Hi and welcome I would think the best way for you to approach this would be to have testing done to determine his baseline levels of the supps he reacts to

fixit have you considered also trying the natural antibiotics?

great that you are finding answers and supps etc that help Michael just wanted to mention that for anyone who may have high levels of mercury to be careful of using ALA (alpha liopic acid) because ALA binds mercury and crosses the blood brain barrier and so can carry mercury INTO the brain we went thru mercury chelation with chlorella (plus extra cilantro in diet) first before adding ALA as the final "mop upper" of brain mercury.