MichaelTampa

Faith, At home we avoid the artificial stuff pretty much, and avoid processed to a point (but do use things like whole grain rice pasta and canned beans), and I am guessing I don't get any corn syrups at home, or at least very very little. Restaurants, who knows, and I always wonder about when I feel worse from a restaurant, it can be so many different things going on there as to why. For a while there, I was eating a lot of corn flour, but have stopped that as I was battling candida (still am really, but making progress) and someone posted here about mold in corn flour. Of course, whole corn flour will have whatever corn sugars are part of the kernel. I have just started eating whole corn again, but only 1/4 cup at a time per doctor's advice. It is one of my favorites. Again, it will have corn sugar as part of the kernel. I guess I'm hoping to eventually be able to consider corn a normal food I can eat, maybe even some corn chips here and there. Is it just the highly refined processed corn sugar that is the problem? On the restaurants, it would be interesting to know what the problem is, but figuring it out isn't too likely, and then I'd probably still go anyway. Michael

I feel like I missed something. I know Faith's son is being triggered by the corn sugars, but was assuming it was more like a particular allergy he had. Is corn sugar, or corn in general, a widely known trigger for TS?

Dr. Sims told me a couple months ago how he got involved in all this TS stuff, and I don't remember the whole story very well. It is something like a friend of a friend found relief from, I think tics that was not considered TS, by getting a jaw adjustment like this type of device. The friend asked Dr. Sims about TS, since he knew someone with TS. They gave it a try, had some success, and that sent Dr. Sims to go out and figure out how it could be. He says he spent a lot of time in the libraries trying to explain it, which I believe he has, at least fairly well. He will tell you, this is not knew information he is giving out, just information others have created that he has put together. I want to update my last post, saying that carafate (contains aluminum) has caused the TS-like symptoms to increase, even while wearing the device. I am on another drug as well (omeprazole, a proton pump inhibitor, designed to reduce acid, I believe the generic of prilosec). My conclusion that it was the carafate was based on the symptoms being TS-like, the knowledge that heavy metals and TS have some history together, and the reaction getting better when I reduced. I was just at my acupuncturist who does muscle testing, and she really believes it was the omeprazole--not the aluminum from the carafate. Just wanted to follow up with that possibility, in case anyone was trying to draw conclusions regarding cause of TS from that situation. Not sure what to believe at this point, I think I'll see more over time as, unfortunately, I will probably need these drugs for a few months. Her muscle testing has been fairly reliable, I have seen her for a couple years now, but, it is less reliable with drugs. Reading the last several messages, reminded me of something as well. Sometimes these TS drugs can actually cause tics. I have heard of a number of cases now, where people get off the drugs, and the tics go down, not just during transition but long-term. They have been on them long enough they didn't realize how much the drug was actually causing. I say that in light of, with this device, all these theories are nice on the nerves and all, but, if you add drugs to the picture, it certainly is going to be less predictable. I would wonder, if someone tries this device but is also taking TS drugs, the drugs could mask the real result. In a way, it's just what I experienced this past weekend (discussed in the above paragraph and previous post). The drugs can be so crazy and unpredictable! Beth--Just want to say, yippee! for you and your son, glad to hear things are going well with these new devices! Since I am still trying to figure out whether to go back to Dr. Garcia myself, I will probably have some questions for you, but my mind is a little too garbled to figure them out. Michael

Guy, Your question on the neurotransmitters and all that kind of stuff makes me think you would benefit from reading the article recently posted with the video. It may get into that just a little bit, it's been a while since I've read it. It also has a picture of the device. Speaking with Dr. Sims, he did mention this trigeminal nerve has something wrapping around it at one point where a serotonin is stored. He believes that irritating this nerve will affect release of serotonin, you won't have enough in the right place, and he believes wearing the device permits restoration of serotonin and reduces OCD symptoms. He may be speculating a bit. Although well-read, neurology is not really his background. He is a dentist who had a reason to learn more about this specific topic. There was an article not too long ago saying some study in Germany concluded it wasn't the basal ganglia after all. The thing about all that stuff is, what are they honestly looking at--what is causing TS, or how the brain ends up looking differently after having TS for so long. I fear people may read too much into that stuff, although I am happy to see them looking and trying and all that. I would double what faith said, the cliff notes is nice, and now that you've got the very basic idea and are still interested, there is no substitute for reading the thread. It is a very complicated issue. I bet there are many things we have experienced and said on this thread that we don't even remember ourselves. Michael

faith, On the braces, love_nfp's post #250, item number 2 gave part of the long-term plan of how this device transitions to braces and then done, and I found that helpful, and made sense to me in terms of how it could work. If you understood that, I was mostly just agreeing with it. After wearing the device for a number of months, if you cut the device back a little bit, making it a little less of an adjustment, but put braces in to move the bottom teeth up, you can move the teeth to fill in that gap, and then end up needing less adjustment. If you do that repeatedly, you end up with the jaw adjusted downward, and teeth adjusted upward, and do not need to wear anything and the adjustment is complete. Just trying to think of my external tics, I probably have arm jerking and eye blinking. Eye blinking nobody notices except myself and doctors. Eye blinking has probably reduced some, but it is hard to say for sure, I don't pay attention to them too much. The arm jerking does seem to have reduced, but be aware we are talking something like this happening now once every month instead of once per week. Another thing it's helping, not sure if this counts as external or not, but without the device, I get into a lot of babbling, and there is a good bit of of syllable repeating going on (not sure if it counts as stuttering, it feels almost on purpose, but I can't help it that I'm doing it on purpose ... huh?). A lot of this just feels emotionally based, which the device is helping, so not sure you'd count it as external. These episodes just haven't happened with the device in, until it happened this past weekend. It was caused by aluminum from carafate, a drug designed to coat the esophagus and stomach and help heal damage from acid reflux. I have badly needed the drug, and it has helped enormously. Aluminum is part of the active ingredient and there is no substitute. I cut back and have recovered from that now, but it is an interesting point, as part of the question of, "is TS really just the jaw misalignment, what about the heavy metal poisoning we have seen with some people", that came up earlier on this thread. For me at least, both aspects seem pretty important, and it looks like aluminum trumps proper jaw alignment. I have done plenty of detox and before I got on the carafate, had heavy metal levels that were very low. With very low heavy metal levels, I still need the jaw adjustment to be anything close to healthy. But, even with the jaw adjustment, I still need very low heavy metal levels. Either problem will mess me up in a very similar TS kind of way. I also got way more inner muscle spasms, all over the place, again, I am sure, from the aluminum, and they have since subsided. I want to point out that I really felt that with the carafate, I started to digest food better as things healed, and from that I really felt that my light sensitivity was starting to be helped by this dental adjustment. So part of what could have been holding this device back from fixing "everything" for me, could have been poor digestion caused by a very damaged digestive system (likely damaged by TS in the first place). The sleep apnea like problem, suspected from TS, also has gone away with the carafate, and it is clear to my GI doctor that this was caused by esophagus inflamation, now on its way to healed due to the carafate. Initially my painful left foot (from mean spasms) did get worse, and sometimes does again when I need to take days off from wearing the dental device. But then it calms down. It really does very well these days, very much helped from the dental device. I want to point this out to you, specifically, in terms of all you're dealing with these days with your son, in terms of, yes, it really is possible that these adjustments (like the chiro you are trying) at first make things worse. Think of these nerves being pinched out of shape for so long, and then they are freed, they might go back and forth between pinched and good, and this transition could be worse, even though you're moving to a better place. If a chiro adjust does not fully take the first time, same thing could happen. I have gone through NAET so much myself, I cannot envision myself how NAET could cause a flare-up, but maybe. Hopefully you can hang in there, but I know, when the dental device made my foot hurt initially, I was pleased, because I knew it was really doing something, and we were headed in the right direction, even if a fine-tuning was needed. Hopefully you can consider that possibility for your son, maybe try to hang in there and be hopeful a little while longer. Just trying to give you a little update on the bigger stuff for me, other than the emotional stuff that the device has helped just sooo much, I just don't have too much of the external tics to talk about. Yes, I was trying to say, I take my experience this morning as a big sign that my jaw was really starting to adjust to the new position. Forgot to mention, but my mouth was not way dry like it has been every other morning wearing the device to bed. I take that to mean my jaw did not fall backward and my mouth was not open the whole time. My mouth must have actually closed in the proper position. After spending that much time in that position, when I took the device out, it was definitely stuck there for a while. My mouth as a whole is much more relaxed as well--compared to when I first got the device. I was really battling, biting down hard and clenching, trying to close my teeth "all the way" together, like it was used to. The device prevented the jaw from closing like it used to--that's what it's there for, but it was a tough adjustment. I do seem to be adjusted to that now. I am going to be checking with a local pain clinic that also deals with TMJ in a non-chiropractic way, and want to get their input. I think their input is will be good to consider, and maybe I'll have a suggestion at that point. Now, I'm a bit in flux myself in terms of what direction to go as far as the dental device (this one, Dr. Garcia's "better" one, local pain clinic, ...). Michael

Faith -- which post would you like clarified? Michael

love_nfp, Thanks for the info from Dr. Sims. It really does seem like the gradual reduction in mouthpiece along with braces is the only way to do it. Braces aren't going to move anything with the same mouthpiece, there will be nowhere to go. Braces all at once without the mouthpiece could perhaps work eventually, but there would be no relief in the meantime and it would probably be harder to guide the teeth into the place you want them as well. Michael

Two things-- 1. guy123--YES, IT IS HARD TO BELIEVE THE FIRST TIME YOU HEAR IT, I KNOW, BUT IT IS TRUE! A MOUTHPIECE CAN ACTUALLY STOP TICS AND OTHER SYMPTOMS OF TOURETTE'S! SORRY TO SCREAM BUT THIS IS AN AMAZING BREAKTHROUGH, AND ANY CLIFF NOTES VERSION NEEDS TO BE A SCREAM! At least for some, it is clear now, their Tourette's is related to trigeminal nerve being irritated by improper jaw alignment. The mouthpiece can decrease or stop this irritation. It seems almost like a variation of TMJ, and I will note that light sensitivity is one common symptom of both conditions. A few of us have gotten them for our children, or, in my case, for myself. 2. I noticed this morning after taking my mouthpiece out to swallow pills, that my jaw would not close "properly". I had no control over how it closed. Looked in the mirror, it turned out it was stuck in the position that it would close with the mouthpiece in--the new "correct" position. Sounds like progress, but, I was able to eat, which meant that I did get to close it a different way to eat. (Without the mouthpiece in, but with my jaw closing like it was in, there would be no eating, since no teeth would touch at all.) Michael

The Dr. Sims device ends up being something that is put on top of the bottom molars (back teeth). So, instead of closing your teeth together resulting in bottom teeth connecting with top teeth, it results in the device connecting with top teeth. It still does feel a lot like the bottom teeth are connecting with the top teeth, since the device is right on top of the bottom teeth. But, as far as the jaw closing, it means the jaw is never closing as much as it used to (at least while you are wearing the device). Once you take it out, your teeth will close all the way again. The device can also adjust the jaw in other dimensions--to the left or right, and frontwards or backwards. For example, love_nfp, your son's bottom teeth are too far back compared to the top teeth, just like mine, so my device also adjusts the jaw frontwards. However, the adjustments in these two dimensions are done with grooves in the device, created by the top teeth literally making an impression in the device when the plastic is still soft. Because this adjustment is made by grooves, it only works when the mouth and teeth are closed together. So, when I go to sleep, the jaw falls open and in a backwards direction, presumably because this is more natural for it. This results in a very dry mouth in the morning, although it does go away after drinking some water and waiting a few minutes. But this aspect is why Dr. Garcia will say it is good to have an additional device for sleeping that really keeps your jaw the way you want it during this time. I can't explain how at this time, since I did not get a real explanation of that myself. In a way, though, yes, love_nfp, Dr. Sims device works by keeping your jaw from closing as much as it would otherwise, and hopefully you get used to that over time. To me, he only spoke very generally about the transition to getting orthodontics, and moving the teeth where they need to be to keep the jaw adjustment you want. So, if you manage this, you are back to square one as your local TMJ specialist says--if you look from the perspective of your teeth coming together. But, where the jaw moves would truly be different. How does one accomplish this transition, I don't know. Can you use braces to move your teeth while wearing the device, and slowly make the device smaller as it is less and less needed? Maybe that's it. If you just took it out and put in braces, I really think your jaw would immediately start closing together all the way so your top and bottom teeth together would meet. It's just hard to imagine that not naturally happening. And, if you're going that route--why not just start with braces--why are we waiting the 6-12 months before braces? Well, I guess you could ask that question either way ... I don't know. Hopefully that helps at least a little bit, but as you can see, I am not clear on a number of things as well. Michael

CP, I am a male with TS, not a kid anymore, but do have some things in common with your son. I know about being at the bottom of the pecking order and taking some things, and then getting so fed up the reaction can be a bit of a blowup beyond what others would expect. Socially, I am agreeing with your husband, others will very likely treat him a bit better. We all may wish the world didn't work that way, but, reality is that it does. As far as the tics and so on, my main tics are more inside than outside (emotions, and the inside spasms that nobody sees but I will feel, and the headaches, and digestive problems from all of the above), but I'll tell you how this would play out for me. The TS disturbances would last until I really process what happened, at least mostly process. For me, after an event like that, I could be still riled up about it for weeks--the fact that I got picked on for the two hours, the fact that I had to "fix it" myself (by dumping the kid on his head), and so on. It could be any event that would help process it--seeing something on TV that reminds me of it (because a TV character experiences something at least a little similar in sticking up for himself, where it seemed outrageous that the character needed to do that), maybe hearing other children discuss it at school, anything like that, really. It might really just take some time. Of course the therapists out there might think having someone talk to him about the event in the right way could help, and that's possible. Michael

FYI, P5P is a form of vitamin B6. It is the kind I take. It is a bit more expensive than the more typical vitamin B6, but I hear it is better--more easily used by the body.

love_nfp, Perhaps the braces first approach will be the simplest. It is hard to criticize the decision, given, when you have the jaw still growing, you don't know how that will end up, so, fix the teeth and see where you are seems reasonable enough, particularly if you are not desperate for immediate relief. One thing, though, just to keep in mind, if your soon is still needing a jaw realignment after that, you could end up going through the braces situation twice. For example, if you need the jaw moved down, the bottom teeth may need to be pulled up away from the jaw as a result. A couple things I was hoping you could clarify. When you said your sons top and bottom teeth don't touch in the front ... do you mean, there is a gap in the top-bottom direction, meaning he could not rip a piece of bread with front teeth because the bread would slip right on through? (I think that would be called an underbite, and I'm saying that because mine cross way too much and they are calling that an overbite.) Or, do you mean that, when the top and bottom teeth do come together or at least cross, the bottom teeth are way behind the top teeth, so they don't come close to touching? My other question relates to this paragraph: "As far as Dr. Sims' device goes, he said it didn't make sense to him to create a posterior gap and then have braces to correct that gap. He said that you would be right back where you started. If anyone has another understanding of this, please write and tell us all." I do not know what a "posterior gap" is that you are referring to. If you could try to explain, that would be great. Thinking about the Dr. Sims device, could you mean that the idea of moving the jaw down only to move the teeth back up to compensate doesn't make sense to the TMJ doctor you saw? My understanding of the benefit of doing that is the jaw movement is what is pinching the nerves, and so moving the teeth back up would not cause one to lose the benefit of adjusting the jaw down. Michael

FYI, I should mention, the drooling, while it continues, at least, has never been very frequent, maybe a couple times a day of wishing that hadn't happened. Of course, it can be at inconvenient times, like, looking down into the pot on the stove, thinking of what to do next for the meal, and then having some drop from my mouth! (Yes, yes, it missed, but it was close...)

love_nfp, I went to Dr. Sims from reading the message board here, and thinking of Dr. Sims as a guy doing a new treatment to treat Tourette's. I live in Tampa (where Dr. Garcia is) and so that was quite a drive up to Maryland, but I really didn't see any option. If I had thought at the time that there was somebody local that could do the same thing, I certainly would have just done that. Now I am looking at things as if Tourette's, at least for me and probably many others, is really just a form of TMJ, where the cause of the problem--misalignment and whatnot in that jaw area--is the same, and some of the symptoms are the same, but some symptoms are different too, possibly because the misalignment is getting different nerves in different ways, or something like that. At first, I wanted to look at TS as a "worse" form of TMJ, where things get pinched so much that you get TS. But then I remembered how terribly painful "regular" TMJ can be (from what I've heard), so I'm not sure "worse" is the right word, and I'm picking "different". I see a few things to consider for anyone about to go this route, and wondering where to go: 1. You ARE going to need somebody local or you are going to do a LOT of traveling over time. You might decide to get a device initially from somebody not local, but in the end, you are going to need maintenance of the device, probably adjustments, eventually move to braces or other adjustments of teeth or other bones, and you are going to want that to be handled by the very same person, or someone who is really bought in to the device you get. [You will see the problem I have now, where, sure, Dr. Sims sent me to someone who can deal with jaw adjustments, but he wants to give me his own device, and thinks this is more important and this is less important, and so on. I have not asked him straight-up, can he deal with adjusting and maintaining and handling me if I want the device I already have, but there is a good chance he would say no. He may not even have the equipment to adjust this, as it is made of different material.] 2. It really seems like a great thing to be able to see some tangible benefit to the device, and/or that the adjustment is a good one for you before spending all the money. I was just desperate and could manage the money and was willing to just risk it, but I am sure others will not feel that way. I really don't know if Dr. Garcia can give you that, I haven't asked. Dr. Sims can potentially do that, as he puts the sticks in your mouth and you can see what happens. I have minimal visible tics, but he did muscle-test to show vast strengthening, and that gave me some hope. Dr. Stack (in Virginia) has probably less TS experience, but let one patient on his youtube video try out different adjustments with sticks in his hotel room before selecting the next day. That's nice. How important this is kind of depends on if you're happy just adjusting the jaw properly, if that is money well spent anyway, then who cares. 3. What about the skill of the person deciding on the adjustments? I was roughly the 25th person Dr. Sims had done for TS, back in July. You have to try to compare that to the world of experience Dr. Garcia has with TMJ, but probably less with TS-style TMJ. Dr. Garcia does not seem to recognize the emotional symptoms--OCD and wild moodswings--that can come with TS, and that concerns me going to him. Maybe he would luck in to fixing that, as Dr. Garcia has fixed that with his adjustment, because in the end, they are just aligning everything perfectly. Maybe Dr. Garcia's electric gadgets allow him to determine the adjustments. In the end, aligning things perfectly and hoping the body works correctly at that point does seem like an excellent place to start, and there is a good argument to be made to finding the most conveniently located person you can find who you have confidence in their skill to do that. Also consider, there are other people besides these people mentioned. You might ask yourself if you really think Dr. Garcia has any special skills or methods that you cannot get from your local TMJ person. I have not heard that Dr. Garcia is a world-renowned TMJ specialist. (Maybe he is, but I have not heard that.) In the end, if I knew what I know now, and was starting fresh, I would probably be going to Dr. Garcia. He is local for me, and he has a device which does have a better chance of being worn during sleep. I am thinking toward the end game, where you adjust your other bones to make the change permanent. I don't want to go through that without knowing I am happy enough with the results, and his sleeping device (which does not permit clenching or whatnot) and daytime device which he claims allows eating (I know mine does not for me) are really a much better option than what I have from Dr. Sims. But, what concerns me about Dr. Garcia, even starting fresh, is you just said the sleeptime device is permanent, and that just raises more questions for me. If we're adjusting the bones, how is the sleeptime device even going to fit? Is its size adjusted as the bones move? And why is it ultimately needed after the bones are realigned? It makes me question if his endgame is really the same as Dr. Sims (and perhaps others). I will just share with you that I still experience drooling. My mouth is just in a different position and I have not adjusted that. It took me 2 months to start talking as I used to--I improved slowly over time. I was much thirstier for over a month, and that finally abated, and I really think it may have been caused by wearing the plastic off and needing water to clean the body out of the plastic, and now, it is worn so much, to the bottom of the one different material, so it may not be wearing nearly as much plastic off, and then I may no longer be needing the extra water because of that. Good luck, and of course am curious to hear what the local TMJ guy says, and any more information you get from Dr. Garcia. Michael

I am not sure, but I have a vague memory that Dr. Sims did a little testing of touching here and there and asking if it hurt. Not as extensive as what Dr. Garcia did. Dr. Sims did nothing like the gum chewing and cotton balls and electrical measurements. Actually, Dr. Garcia did not do that yet with me, but I was told that would be part of my next appointment (if I choose to pursue). Faith--FYI, the thing that Dr. Garcia calls a splint for the daytime use is fairly similar to the device that I got from Dr. Sims, who calls it a transcranial vertical distractor. What a yukky name that is! The nighttime one is definitely larger, it may cover top and bottom teeth but I don't remember, and looks like it has a metal bar that I wonder if it is to lock in place while wearing it. Dr. Garcia did have samples you can look at. Dr. Sims did not, and maybe that's the difference with Dr. Garcia, this is all he does, with Dr. Sims it is more of a new thing he is doing here and there as TS patients walk in. For me, the Dr. Sims device repositions the jaw when closed in all 3 dimensions--lower, to the left, and more forward. This is personalized to my situation and the adjustment Dr. Sims thought I needed. Grooves are made on the top of the device (the top of the fake bottom teeth, if you will) so your top teeth fit right in. The grooves are literally made by your top teeth when the plastic is still soft. This part makes the adjustment in the left/right and forward/backward direction work correctly. But, when I sleep, my mouth opens and my jaw falls backward and probably to the right as well. Seeing the device Dr. Garcia has, which is a little narrower and different looking on the top, I'm not sure how his device would accomplish this. The advantage I see with Dr. Garcia's device is that the top of the fake bottom teeth are narrower than real teeth (thinking molars here which are wide), and it is smoother plastic, so trying to eat could be less trouble. When I ate with Dr. Sims device one day, it created lots of sores from that device attacking my inside cheek flesh, and also the tip of my tounge was damaged and in pain from rubbing against the molded plastic on top which was rough, not smooth. You have to rub your tongue on your teeth to move the food around and off your teeth--try eating without doing that! Beth--On the cost of $3200, I am wondering what that covers. I already had the appointment with X-rays, but not the electrical/gum/cotton stuff, and I thought those devices were in the range of $900 for one and $1400 for the other (vague memory from what the assistant said during my appointment, and was not clear if that was device only or what). Just trying to figure out what costs are left for me if I go forward. Curious what you know, but don't work too hard on it, I know I can just call and ask, I will eventually, I am still just compiling my questions for him--and waiting for those sores to heal from eating with Dr. Sims device--the one was very bad! Michael

Beth, I did have that appointment with Dr. Garcia. My intention was that he would adjust the appliance I got from Dr. Sims. That did not happen, and he was pushing that I used his appliances. He actually has one for sleeping and one for waketime. He thinks his are better. I can see some ways in which his might be better. He says all his clients eat with their appliances in. He thinks that to not do that is like having a knee brace for a problem knee and then not wear it when you go jogging or running. I'm not sure I buy that analogy (my teeth are closed plenty on each other even when I'm not eating), and isn't it that closure that is aggravating nerves, but it is an interesting point to consider. I haven't made any decisions yet, other than to go back and discuss with him, armed with a long list of questions, which I am still preparing here and there. For example, as I wake up unable to breathe sometimes and it is a real struggle to get that going each time (sleep apnea or something that kind of looks like it), I have to wonder if his nighttime appliance which may lock things into place a bit more, is going to make it harder to survive when this happens. Also, my biggest Tourette's related issue is fluorescent light sensitivity, and I want to have some reason to think his new appliances are going to fix that, rather than just get another appliance that isn't dealing with an issue that is critical for me. As background, the appliance I got from Dr. Sims really helped my emotional stability, which is great, but had no improvement on the more physical symptoms (light sensitivity and spasms/tics). It doesn't seem that the knowledge base is that great to say that these symptoms are fixed by adjusting this dislocation here, and these other symptoms relate to this other dislocation there, and so on. Good luck with your appointment! I'll be interested to hear how it goes. By the way, Dr. Garcia is very highstrung, so you might want to be prepared for that. Michael

To update my situation a little more, after the pain in my teeth went away (perhaps 4-5 days), I put the device in, and it has been again doing really nice things for my calmness, a little calmer than the previous segment of time where I had it in, but maybe not quite as calm as the original segment of time (but very close, if not the same). My appointment with the local TMJ guy, an ex-professor of Dr. Sims as it would turn out, is tomorrow. I'm kind of looking forward to his reaction, if he thinks any adjustment is appropriate, and what long-term game plan he sees. I'm interested also to hear from the others, hoping they are getting some benefit. My experience shows me that this kind of treatment can certainly matter, although it's difficult now for me to see the long-term game-plan. But, it also shows that it can be complicated. And, as Faith has pointed out, the experience with the other children shows just how much more complicated it can be for children, when all the bones and teeth are growing. Michael

Faith, My sores did eventually clear enough that I put the device back in. I did that while also using a gel on the sore areas to try to avoid sores from happening again. While the sores did still slowly develop (seen by inspection with flashlight at mirror), it never caused pain in those areas while wearing. By the way, the device did not work as well. It worked about 50%, meaning, about half as calmed down as before, and instead of lower the pulse to 70 (from 80), it lowered the pulse to 75. BUUUUUTTTT, what did happen is, by day 6 or 7, the longest I ever had it in all the time except for meals, I was undergoing preparation for endoscopy on Wednesday last week and colonoscopy on Friday last week, and food stopped on Thursday after breakfast, so then it was worn continuously until Friday morning, when the teeth on one side of my mouth were in extreme pain, and I had to take the device out again. The sores I had previously I understand from the perspective of, this is on the right side of my mouth, where I do not have a bottom wisdom tooth (never had one there, does not show up on x-rays), but I do have a top wisdom tooth, and it points somewhat outward (to the right, where my cheek is) rather than straight down. This is what is scraping and causing the sore with the device in, which moves my jaw to the left. But, this pain was on my lower teeth on the left side. I have both wisdom teeth on the left side, and the teeth seem more or less pointed properly. This lower left side, I have had a few cavities maybe 20 years ago, and about 7 years ago had cavitations (infections below teeth) causing pain when biting down, and I treated it with clay and castor oil and the pain went away (although I hear the cavitation is really not eliminated from that, just reduced). So, there are a few ideas I have for what caused all that pain. It did come at a time of the device being continuously in, and perhaps an infection developed, and perhaps the cavitations helped that happen. But, it could be teeth realigning and causing pain too. Or, maybe the device is pushing down and scraping or tapping my teeth and irritating that way? Or, perhaps something happened in the endoscopy that caused this, which happened with the device taken out. Who knows. It hurt so bad, even the gentlest touch with a toothbrush caused stinging pain. This started Friday morning, and the pain slowly went away, and this morning was pain-free and put the device back in. The last couple days, it was just the wisdom tooth on that lower left side that hurt. Too early to really report on how well it is working, I don't feel any great relief is all I can say, but it's a little early I think. I already had made an appointment with the local dentist, referred by Dr. Sims, someone he knows, I believe he was Dr. Sims' professor at one point in time. However, the dentist had just left for Portugal, he is finally due back next week, so I have another week or so before I get to see him. This local dentist is someone used to dealing with TMJ, which is one of the things Dr. Sims would say to look for to help adjust the device. Hopefully his experiences of adjustments of people with TMJ will help him understand what is going on with me.

Vickie, I do not remember having strep as a child, but I will ask my mother the next time I get a chance to speak with her. I was not diagnosed with Tourette's until last year, at age 40, but the signs and symptoms were there by at least age 10, perhaps as early as age 5. My symptoms are more emotional, with some physical/vocal tics, and extreme sensitivity to fluorescent lights and more recently cell phones and other wireless technologies. I have not noticed the symptoms worsening with virus or cold, but they definitely get much worse under stress. There really is no big reason why I wonder about PANDAS, other than continually searching for reasons and answers and treatments to help. Michael

I am 41 years old and have Tourette's with various mental/emotional components, including those that will get labeled OCD. I used to get about 900 mg/day, and now only take 350 mg/day. It went down when I got the dental device from Dr. Sims. I too had read that for adults 15-25 grams can be helpful. My amounts were determined using muscle testing (kinesiology) by my acupuncturist, as the maximum amount that my body said would be useful for me. By the way, by itself, my body could tolerate even less, but when combined with choline and panthothenic acid (such as in Country Life's tablet), then my body could benefit from more. I am surprised to hear anyone looking to cover the taste of this stuff up! I found the pure inositol powder to be very sweet. To do it quickly, I would just mix in water, but, for fun, I would sprinkle on food, like corn bread (back when I was eating corn flour, so sad, no more of that for now).

Hi there, this is my first time on the PANDAS forum. I have been on the Tourette's forum for a few months. I am beginning to explore the possibility of Strep having something to do with my Tourette's. I am 41 years old. If I did get PANDAS as a child, and it went untreated, could it still be a problem for me? Does anyone have any suggestions regarding how to test for it, what type of health care practitioner, etc? And how it might be treated as an adult? Thanks, Michael

This may sound funny question, but I've been wondering long enough, so I'll ask it. All the discussion of PANDAS I hear relates to children, and quick onset. I am 41 years old and have Tourette's, likely since about age 5. (I was just diagnosed about a year ago, but, the symptoms now being related to Tourette's were definitely there by age 10, but probably more like age 5.) Should I be considering any kind of testing related to PANDAS or Strep? Is that the same or different? Is this a regular medical doctor blood test kind of thing? Thanks, Michael

I just spoke with Dr. Sims, to go over a couple issues I have been experiencing. With the headaches I have been experiencing in transition (putting in and taking out when I had to), he is suggesting I get a slight adjustment from someone locally. He gave a referral, someone he knows, and I will start there, but he mentions the key is finding someone with knowledge of TMJ (how nerves can be impacted by adjustments) and orthodontics. He was having trouble picturing the flesh being eaten by my upper wisdom teeth as a result of the adjustment--not denying it, just saying it's hard over the phone to comment on it, he'd need to really see it to understand it. I don't think he has run into that before. Perhaps it is also a sign that a slight adjustment would be helpful. He said that when we adjust a lower jaw, other bones will adjust, so it is not necessarily just putting the lower jaw in the place where it belongs in relation to where others are. Of course, if you don't put it more in that ballpark, that won't be good, but we really need to look at reducing symptoms and trusting the other bones to adjust. (And, as you see from the above paragraph, then making adjustments as necessary as time goes on.) Faith--I asked him about why emotional symptoms would improve, and he shared his viewpoint (which he did share when I was there, I had forgotten about it). The trigeminal nerve (a.k.a. crainial nerve number 5, the one directly being compressed in these TS cases, as he sees it), is the nerve that also connects to a netlike material called reticular formation in the brainstem, where 80% of our serotonin is. An impulse through there would release serotonin, and, after a while, you have too little serotonin and you function very poorly emotionally, and overreact, and so on. He said norepinephrine is similarly affected in the locus serilius (sp?). His theory sounds plausible enough to me.

Faith--The short answer to your question is "I don't know". As Dr. Sims was going over that page with pictures of the nerves with me, I kept looking for the one related to emotions and thoughts, and didn't find one. Could it be that all the distress and tics to the digestive tract and other areas, even while not physically felt, cause the emotional distress? Maybe, but, the MD psychiatrist who diagnosed me with TS really has the viewpoint that these uncontrolled emotions and thoughts are tics--they are thought tics and emotion tics, just not physical tics. If you believe that, and I do feel my experience through some wild times and not so wild times is consistent with that theory, then you would have to say there is some nerve being compressed again, that relates to these thoughts/emotions, maybe just not labeled on that paper Dr. Sims gave us. Dr. Sims has seen emotional symptoms improved on patients whose primary symptoms are physical, so he was expecting it to help, but did not say so that directly. He did mention I was really the first whose visible physical symptoms, though real, were dwarved by emotional symptoms. In that sense, he saw it as a bit of a test without anything to base any expectations. By the way, I want to stress "visible" physical symptoms. Perhaps a lot of the digestive and phlegm issues are the result of physical tics which are not seen or felt. I am expecting it is no coincidence that the word "nervous", which describes me without this device, does have "nerve" as a root. It really is an excellent question, what I'd love to have the answer to, but that's about all I can offer at the moment. My acupuncturist and I will be testing a lot of items and their effect on me at our appointment tomorrow, and it's possible that testing and/or our discussion will reveal something of interest related to this question. By the way, not sure if I've posted previously, but the positive effects for me were even growing and growing, even better emotionally and some physical symptoms of digestion improving and unwanted phlegm/coughing really reduced. Then I had to take it out from sores in the mouth, and wow, it's just incredible the difference. I hope to get it back in soon! Love-nfp--I think that is an excellent question for Dr. Sims, and I would love to hear the answer. I know he has said the MRI confirms/shows suspected structural problems (things out of place). But I don't remember the details of exactly what was being shown as out of place. I know he thinks it's somewhat relevant to what he's treating, and that is why he's ordering them. Michael

love_nfp, If I remember correctly what Dr. Sims told me when I saw him, he said the Dr. Stacks ran into this procedure first, although the first patient may not have been a true Tourette's patient. And, I will note, if you read the Sims/Stacks paper, you will see that one of the 6 patients was not Tourette's, they had lots of problems. But, I'm not sure who came up with it is ultimately the most important thing. Perhaps experience is important, and if they do it differently, which way makes more sense to you. The Dr. Stacks video looks like the patient was sent home to examine what level adjustment was best. I would have loved if Dr. Sims gave me that option, because I had someone lined up to do kinesiology testing regarding the level of adjustment. Dr. Sims just decided quickly in the office. Maybe he has the experience to do it that way, maybe he got it just right. It's too early for me to say. On the other hand, if the only way Dr. Stacks can decide is to have you play around in a hotel room for a few days, that only works if you have the time to do that and the confidence in your ability to do it. Dr. Sims does seem to be willing to help follow up with people here and the issues they have been having. That can be important. Will Dr. Stacks? I guess we don't know that from this board, we don't have anyone here who went to him. I'm a bit surprised to hear that was Dr. Stacks first patient. Dr. Sims estimated I was roughly number 25. (I was there 2 weeks ago.) A good question for both might be the question I plan to ask Dr. Sims regarding the adjustment he gave me ... is the adjustment based on putting the jaw perfectly into the right place into relation of other bones, or is it based on minimizing symptoms from day 1? It's not obvious to me which would be better long term, but seems like a good thing to discuss before you get into it. (I'm saying that as someone who wished they had, not as someone who actually did it.) Good luck, Michael