powerofprayer

Can someone explain to me the science behind probiotics being contraindicated with an over active immune system?

Mom md, i've personally never encountered bed bugs, but i've heard that if you examine the mattress, in the seams, you will see little tiny black balls which is their feces (GROSS, I know). I believe the actual bug is difficult to "see". Apparently, you're supposed to do this mattress examination in all hotels.......budget or 5 star. That freaks me out that you can't even have peace of mind when spending 150+ a night at a "nice" hotel.

But if it's positive, it definitely confirms PANDAS? I think i posted this before somewhere, but since your question is specifically one I asked Dr. Cunningham, i will copy her response here. When I asked her about my own low score (100), her respons was "FOR THE LOW SCORE, WE CAN CONCLUDE THAT YOU DO NOT HAVE ANTIBODIES THAT SIGNAL NEURONAL CELLS THROUGH CAM KINASE IN YOUR BLOOD. THAT IS ALL WE CAN CONCLUDE FROM THE LOW NORMAL SCORE." When I asked her if my dd's high score (175) meant she IS a PANDAS case, her response was "WE CAN CONCLUDE THAT SHE MAY HAVE ANTIBODIES IN HER BLOOD THAT SIGNAL NEURONAL CELLS AND MAY CONTRIBUTE TO SYMPTOMS. WE CAN ALSO SEE THAT SHE IS IN THE PANDAS RANGE. PANDAS ALSO IS A CLINICAL ENTITY WITH ABRUPT ONSET AND ASSOCIATION WITH STREPTOCOCCAL INFECTION" So i guess they are still unsure since this is still a study. the fact that she said my DD MAY have antibodies in her blood that signal neuronal cells tells me that there COULD be something else causing symptoms. Do y'all think I'm understanding that correctly?

I think you should have a strep culture done. From what I've been reading over on the PANDAS forum, you can't discount PANDAS simply based on the titer score. Something like over 30% of kids will have low titers even when there is/was a strep infection. I am by no means an expert on this, still reading/learning myself. You maybe should copy and paste your post to the PANDAS forum. If you are leaning towards that possibility at all, the people there know a lot and can offer great guidance and resources. You're not alone either in the husband dept. I find that I hardly even discuss it with my hubby anymore b/c he thinks that I read something and then want to pin that dx on our daughters. He's all about letting her "be a kid" and while i do agree with that, but i worry if i do just "let it go", there will be permanent changes to her brain and the tics won't resolve. So if there is something underlying, i want to fix it! I have vocal/motor tics to this day and I pray that neither of my dds will have to battle it lifelong as I have.

. Yes, that was me.....my CAMK score was just 100 , so very "normal". So your high CAMK just blew my "theory" out of the water that PERHAPS the CAMK regulates into adulthood even though symptoms still persist. This question has been on my mind awhile, "How many people believe the PANDAS dx just based on the CAM score?" I ask because when I questioned Dr Cunningham about my dd having PANDAS b/c of her Cam K being 175, her reply was, "WE CAN CONCLUDE THAT SHE MAY HAVE ANTIBODIES IN HER BLOOD THAT SIGNAL NEURONAL CELLS AND MAY CONTRIBUTE TO SYMPTOMS. WE CAN ALSO SEE THAT SHE IS IN THE PANDAS RANGE. PANDAS ALSO IS A CLINICAL ENTITY WITH ABRUPT ONSET AND ASSOCIATION WITH STREPTOCOCCAL INFECTION" Her response doesn't sound like the PANDAS dx can be real conclusive simply based on CAMK score. Is the research just still too new to determine that? For us there wasn't an abrupt onset nor has she ever been dx w/ strep. Thus, my confusion and indecisiveness on how to proceed. We are currently stationed in somewhat of a "backwoods country location" so I am leary of even bringing up the suggestion to strep test her and proceed w/ abx, "just to see what happens".

Michael, I am 38 and have never been diagnosed with TS but i do have vocal AND motor tics. I've just always assumed it was TS but was too embarassed to see anyone. So fast forward to a couple years ago when my dd (then 4) started with a blinking tic. Finally i was forced to talk about my own condition to try to get her help. anyway, we both had Dr CUnningham run our numbers and this is what we came up with. MINE: Anti-Lysoganglioside 2 hours patient 640 positive control >1280 negative control 160 normal range 80-320 normal mean 147 Anti-Tubulin 2 hours patient 2000 positive control 16000 negative control 250 normal range 250-1000 normal mean 609 Anti-Dopamine 1 2 hours patient 2000 positive control 8000 negative control 1000 normal range 500-2000 normal mean 1056 Anti-Dopamine 2 2 hours patient 4000 positive control 16000 negative control 2000 normal range 2000-16000 normal mean 6000 CAMK 100 MY DD Anti-Lysoganglioside 2 hours patient 80 positive control >1280 negative control 160 normal range 80-320 normal mean 147 Anti-Tubulin 2 hours patient 2000 positive control 16000 negative control 250 normal range 250-1000 normal mean 609 Anti-Dopamine 1 2 hours patient 1000 positive control 8000 negative control 1000 normal range 500-2000 normal mean 1056 Anti-Dopamine 2 2 hours patient 4000 positive control 16000 negative control 2000 normal range 2000-16000 normal mean 6000 CAMK 175 I don't understand what the antineuronal antibody titers really measure. Do we know yet? Are they significant at all? I've gotta run, but i thought i'd post these quickly so you could "compare" with another adult.

"Erysipelas is yet another, and of course the great atopic dermatitis" Sorry i don't know how to quote just a section of a post. Can someone help? anyway, the "atopic dermatitis" jumped out at me. Isn't that eczema? I'm sure that's what a dermatologist once told me was under my eye. I frequently get a dry, reddish patch under my eye, sometimes both but the right seems to be more affected. Are you saying STREP causes that, or the rash is actually a strep rash?? Got me thinking now......

Kim, I did check my own vaccine record and I had a Rubella vax in 1982, i would've been 11 and a half at the time. I THINK my symptoms started before that. I guess at that time the combo MMR wasn't given. It showed i had the measles vax at around one year of age and that's it. No mumps vaxes at all. That one rubella shot in 82 was the only one recorded other than my infant shots and sometihng around 5 yo, i think it was a DTP booster.

I've always assumed I have TS.......the earliest symptoms I remember go back to when i was 9 or 10 probably. Growing up, I was always told to "stop that" b/c everyone assumed the tics were just bad habits. Of course all that ridicule led embarassment and i never discussed it w/ anyone, not even drs until recently. Anyway, when I first heard of PANDAS, it never crossed my mind that that could be why I tic. I was mostly checking into PANDAS for my dd. Now though, i do wonder........i don't remember having strep, but i do remember having sore throats. Could i jsut have had asymptomatic strep like many kids here do? As far as OCD, i think it was there (and still is) just not nearly as extreme as some cases we read about here. I remember one of my "habits" was to say the F word immediately followed by the SH word.......BUT, i would ONLY say this around my sis and one particular friend. Why is that?? If it were actually coprolalia, as in TS, why wouldn't I say it in all situations, no matter where i was or who i was with? My Mom says she does NOT remember me ever shouting that out at home. so that makes me wonder if it was more OCD "making" me say that.......i dunno.....OCD and tics....there is such a fine line sometimes. Another thing that makes me wonder is why haven't my symptoms gotten any better into adulthood......like TS is *supposed* to do? Could it be that I have a BBB breach and everything gets by? then again my recent CamKinase score was 100. Have any other adults here had the test run on themselves? other things i remember from childhood that could be related is temper tantrums (well i dont' really remember, just stories i've heard about how I'd throw the worst fits......lucky me, there is even photo evidence of one of those There was a period of time where I'd have really weird, frightening dreams.....i could never recall what was scary about them but i know i'd wake up freaking out. I do recall there was sounds.......like first there'd be an eerily silence and then sooo suddenly an ear shattering LOUD sound. even thinking about that now gives me chills. i could never explain those dreams to anyonne, even now it's probably hard to understand. I dont' know how long those went on for. I talked in my sleep alot too......and once or twice sleptwalked. I'd have some occasional bedwetting but nothing that was a problem. I'd sure be curious to know what some of the PANDAS experts opinions are on this. Does anyone know if there is ANY research out there?? I wonder if i'd be able to convince any dr to do a trial of high dose abx on me? Oh one more thing maybe worth mentioning.......my Dad......who i don't ever remember having strange behaviors; well he now has a vocal tic, which i'd say i've only noticed in the last 10 years or so. i dont' have any memories of him doing that when i lived at home. He has a whole host of other health problems too. i have a sis who had some "habits" as a kid (smelling books.....but i did that too....we BOTH still do that one) and she admits to having some OCD thoughts dealing with numbers now. My brother on the other hand doesn't seem to have anything related to these disorders. sorry this post is all over the place.....i should've organized my thoughts better. In my defense it's VERY late and I'm exhausted!

Carolyn, My official guide to WDW says you simply have to make your needs know when you make your advance reservations. i have a friend who recently went with her son who is GF/CF and I believe that's all they had to do as well. I dont' know if that will limit the places you can eat or if ALL the restaurants in the park can accommodate the special diets. But definitely call ahead........wayyyy ahead!!

Faith......i did see them do the draw and place them in the correctly marked tubes. I didn't seem them spin the serum though, so i guess a mix up is a remote possiblity. I would think they are better than that at their jobs though. The only abx she's ever been on is the Bactrim for prevention of UTIs and something for the odd ear infection......amox i believe. She has not been sick recently. EAMOM......re the intracellular strep.....you say it's not easily cultured, but is there another way to detect it? So am i correct in understanding that if there is "hidden" strep, a throat swap will not produce postive results, even after a 72 hour culture? I am hesitant to do a trial at higher doses of abx at this point just b/c tics are so mild right now. I'm really not sure i'd notice a difference even if they waned even more. Yet i'm scared to wait for a big waxing episode too. Has anyone noticed that PANDAS tics typically wax/wane w/o treatment (no abx, steroids, IVIG/PEX) like the TS tics do? I udnerstand with TS that's the nature of tics, whether there is treatment or not. I was wondering if the same is true for PANDAS. I know most of you PANDAS parents are on some course of treatment now, but maybe you can remember back to prior to treatment. one issue dd has that may be considered sensory is her intense fear of automatic flushing toilets. I would have expected that to resolve by now if it was just a typical childhood fear but she still REFUSES to use them. I find that since all this started (the tics i mean), i over analyze things like fears and immediately want to call it an "anxiety disorder". I mean, can't a child just have a fear w/o it being related to the TS or Pandas or whatever?

Well I hope you don't mind me "piggybacking" on your topic, Betty04 but it is the perfect heading for me and caught my eye. I just got the CamKinase results back on my dd (6yo) and myself (38yo F w/ what I always have assumed is TS though never Dx'd) DD started with tics and NO OTHER Pandas behaviours when she was 4. At the time i had her ASO done when i first hear about Pandas but they were very low. I know now that really means nothing. BUt b/c it was low AND the fact there was no OCD, rages, etc i assumed she would be just like me, though i prayed very hard these would be transient. Sooooo back to present day, i expected our CamKinase to be relatively the same.....boy was i wrong! DDs is 175 and mine is 100. I am still awaiting the rest of the results. Ok i have to admit I don't know/understand exactly what these tests measured, I was just curious and had them run. I've TRIED to read the JNI paper but it's way above my head. Soooo, am I to assume dd has Pandas and start pursuing treatment for that? I am hesitant to b/c even the tics are VERY mild right now and like i said she has NO associated Pandas behaviours. even when they are waxing, they are not terribly bad at this point. I worry though, if i remain complacent that once she hits the puberty age, things will explode. She is the most easy going, well rounded 6 yo........though i'm probably slightly biased A little background: she has never been dx'd with strep.....we've had a couple swabs done over the last couple years when friends would turn up with strep. She once took Bactrim as a prophylaxis for 1 year, against UTIs b/c she had VUR (urine reflux) but that condition cleared on its own. It was about 5 months after that that her tics started. for the longest time her tics were just eye blinking. this past spring she started clearing her throat and doing a strange breathing tic. but, like i said, all tics are very mild right now. What would some of you advise in this case? Again i am REALLLY stunned that her level was a 175, i totally expected the two of us to be low. What happens if Pandas is not treated? Is that why I still have tics as an adult......could it have started as Pandas and just kept going and now it's "permanent" so to speak? I've always wondered my own tics never diminished as I got older, they actually seem to be at their worst IMO. Thanks for ANY insight you can provide! There seems to be alot of knowledge regarding Cunningham's study here. I usually post on the tics/ts board though, so i did this in a shorter version over there too.

Ok the CamKinase came back yesterday. My dd (6yo) whom I NEVER thought of as PANDAS b/c there is no OCD, anxiety, rages, etc.... her ONLY symptom is tics. And those are even minimal right now. However hers was 175 which Kathy says is in the "upper half of the PANDAS group". So now what? Do i assume she IS truly PANDAS are start pursuing a provider that will understand these results? Or do i wait for the other results? I am hesitant to start a course of antibiotics since she is very mild right now anyway. Even when her tics wax, there is NEVER any OCD, rages, anxiety, or any of the other issues PANDAS parents discuss. OK, now MY own score was 100 which Kathy said is "that of a normal patient". I assume she just means a non Pandas patient. I DO have what i would say are moderate tics most of the time. Can anyone draw any conclusions from these scores? I really was expecting our scores to come out relatively the same........but they are not and that's what mainly confuses me. for the past two and half years (onset of tics for dd) I assumed since I have TS, then she was/is headed down the same path. I dunno.......just thinking "out loud" now. I sent some Q's to Kathy and she said she'd have Madeleine answer them. I will also post this on the Pandas board.......lots of ppl seem very knowledgable about this research there and i don't know if they visit the tics/tourettes board. Thanks for any insight you might provide!

Just to update on this topic.....i DID finally get this test done last week. Just awaiting results now....... can anyone of you who had it done tell me about how long it takes for results??

i read this the other day and it scared the "be-jesus" out of me! http://www.thenewstribune.com/news/northwe...91998.html#none If i had any doubt before, this has confirmed my decison to NOT take it. I'm a little confused though.......does the article imply that each state makes decisions on how much and what ingredients go into a vaccine? Would the vaccine that gets produce be the same for ALL states?? I've been increasing Vit D around here and have also added Olive Leaf Extract........I read something about that supp being good for decreasing the viral load. I've started taking it myself already cuz we're getting ready to fly to Canada in a couple weeks. I'm hoping it'll give us some protection against that recirculated germ-filled air on the plane.

deleted....i see the article i posted was just linked above by EAMom......sorry.

Hmmmm, you do present a good argument, Kelly! So she WILL run these tests w/o the money? Why on earth would anyone pay then? She did tell me that i could send samples for both myself and my dd for the $200. She sent me some papers too about her study but i did not understand them at all. I'm guessing you have the same ones? Is one called " Antibody-mediated neuronal cell signaling in behavior and movement disorders"? Maybe i just need to go through them more slowly. Neither my dd nor myself have ever been diagnosed with TS though i've dealt with it long enough, I'm nearly 100% sure that's what it is. BUUUUUT, yes, wouldn't it be nice to know for sure. We are a military family......I wonder if our little lab at the MTF here will draw the samples for us? Anyone? How did you go about getting the serum sent to Dr Cunningham? Don't labs need some kind of drs orders before they draw blood?

Kelly, I've been in touch with Dr. Cunningham to find out more about her tests. I'm not sure I fully understand what her tests can show. From what you know, will it show that the subject definitely has PANDAS vs TS vs SC?? That's where I'm unclear. Did she give a treatment plan based on your childrens' results? I was considering this, but then I saw the $200 price tag and I'm not sure it's worth it if it's not going to give me any clear cut info.

Bonnie, My dd 6yo smells her fingers/hands alot too. I wouldn't say "constantly" but it is frequently. I feel with her it's a complulation rather than a tic b/c she does it after touching something or after washing her hands. Tics are more random. How about your son? Does he smell them after touching things or is it just any old time for no particular reason? DD is also doing the wheezing/exhaling tic, just started recently. As an adult with tics, I CAN attest to the fact that they DO affect mental processes/completion of tasks. As far as expending mental energy, for me, it seems greatest when I'm constantly trying to think about NOT ticcing. That's mentally exhausting. I do easily get distracted when reading especially, b/c of tics. Lots of times though it's just plain old ADD, i think. My mind just wanders..... Are you concerned for school? Does he have a 504 plan?

It seems i've read somewhere.....maybe here?.......that genetic TS will often manifest as OCD in girls. so instead of getting the motor/vocal tics like the parent, they would have OCD tendencies instead. Has anyone heard of that?

Zoe, I wish i had insight for you, but I too have been wondering about the phenol sensitivities. I have a question about your dietary changes though.......what made you decide to cut out those foods? was your decision based on a food sensitivity or allergy test? Or were you really taking notice of her reactions to those foods and tried elimination and then saw positive results? That does seem like it would be VERY hard to follow. I wish you the best of success with all you try.

Hi Mike and welcome, I'm sure everyone here would agree that the Sheila Rogers' book on Tics and Tourettes is FAR more reliable and a much better bang for your buck. Go here to read more http://www.latitudes.org/book.html You will see it on the homepage for latitudes also. I can't believe that Mary Anderson's book is $37. IF I had "cured" my child's tics as well as my own, believe me you ALL would know how i did it for FREE.....and i wouldn't claim that it's a cure for ALL! If you're googling how to end tics, you'll probably also come by a book by Steve Driskoll which I wouldn't go near either. I see on Amazon that one is $47.....RIDICULOUS!! Seriously, check out Sheila's.......i believe most everyone here has it and it is WELL USED!!

DEFINITELY will be praying for success today, CCC. Thanks for keeping us all informed.

I just received these two supps today from iherb.....both are the NOW brand. Does anyone have any suggestions for HOW to take them? For example, do either of them work better by taking with certain foods, or maybe avoiding certain foods for a couple hours. Can they be taken together?? Should I just take what is recommended on the label for myself and cut the dose in half for my 6yo dd. I do plan on starting the L-Carnitine FIRST for a few days just to see if I notice any difference from the one. I like to go slowly when adding supps. Thanks for any input.

CCC, Thanks for posting your experience. Thanks also to CSP and Gemi. CCC, i was wondering if your son had Xrays done there at Dr Simms? what about the MRI that's been mentioned before? I hope and pray Thursday brings awesome results for your son. About the second step, the braces, did someone here mention before that Dr Simm's would work with your own ortho on that? I know he doesn't participate in any insurance programs so if our own dentist/ortho can do the braces it would be FAR less costly for us. Thanks again to everyone who are being "pioneers" in this treatment.