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Sunflower

ADULT based PANDAS Tourettes? & Tics diminish with antibiotics?

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Hi

 

Could and Adult with tourettes actually have adult based PANDAS tics/Tourettes? For example caught PANDAS as a young child but was never effectively treated and then the tics continued into adult hood?

 

Antibiotic theory...

 

If an adult with tics/tourettes symptoms diminish while on antibiotics could this be a sign that this could be an undiagnosed PANDAS that has continued into adulthood and could possibly be treated with course antibiotics?

 

Has anyone noticed if tics diminish while on antibiotics??

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Sunflower,

sure, that is certainly possible. It couldn't hurt to have the titers test if you can. However, I believe the PANDAS scenerio is usually where there is a sudden exacerbation of tics and/or OCD. Is this what you are suspecting for your boyfriend? Are his tics mild? Can he remember having sudden exacerbations of tics or is it always that way for him? Has he ever taken antibiotics or did he recently? If so, what was the effect?

 

Faith

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Hi Faith,

 

Thanks for your reply. Yes there is little research on Adult PANDAS caught from childhood. But I am not sure if he has tourettes or PANDAS so I'm doing some investigation. We have been together for 14 months.

 

I noticed that when he was sick he tics were almost totally gone. I was like hey your tics have dmished quite dramatically for almost 4 days?! what the?! I have this bad cold! he would reply so I'm not sure if it was because he was tired and reduced his eye blinking/throat clearing. He was on antibiotics at the time. So I though maybe there could be a connection. Went to the doc yesterday and got some antibitotics. His healthy but I asked him to try this so that I can clearly see if his tics improved because he was tired or it was the antibiotics that worked.

 

I also asked the doc to check his magnesium and TSH as he does sweat like crazy and hasa fast heart beat. Not sure if that will show anything but i have heard that many people with Tourettes had magnesium deficiency. I have also asked him about his tics pity he says he can't quite rember how it happened he told me it started with sniffling when he was 12, then throat clearling then when he was 16 more tics motor/vocal. So it was a gradual thing I think. His brother also has throat clearing tic.

 

His tics are mild but he does have days when they can be bad - I can never predict if they are going to be a good day or not they change every day! He told me his dad had blinking when he was a child but then they disappered when he turned 31. So maybe it could be Tourettes or PANDAS not sure? Anyway still doing some investigation!

 

We have an appointment with a DAN! doctor at the end of the month. I'm sure he has some sort of fungi or yeast thing happening because he has the dark circle and white toungue under his eyes which people say need nylasin or some other medicine to ficx up.

 

For PANDA what blood exam should we be doing? What do you mean by tires?

 

Thanks so much Faith! I appreciate your help.

 

 

quote name='faith' date='Nov 2 2007, 10:50 PM' post='18405']

Sunflower,

sure, that is certainly possible. It couldn't hurt to have the titers test if you can. However, I believe the PANDAS scenerio is usually where there is a sudden exacerbation of tics and/or OCD. Is this what you are suspecting for your boyfriend? Are his tics mild? Can he remember having sudden exacerbations of tics or is it always that way for him? Has he ever taken antibiotics or did he recently? If so, what was the effect?

 

Faith

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Update with antibiotics

 

his tics have diminished with antibiotics still doing investigating about this tho...... we are double checking that its not something else that we have done.....will continue checking......

 

 

Hi Faith,

 

Thanks for your reply. Yes there is little research on Adult PANDAS caught from childhood. But I am not sure if he has tourettes or PANDAS so I'm doing some investigation. We have been together for 14 months.

 

I noticed that when he was sick he tics were almost totally gone. I was like hey your tics have dmished quite dramatically for almost 4 days?! what the?! I have this bad cold! he would reply so I'm not sure if it was because he was tired and reduced his eye blinking/throat clearing. He was on antibiotics at the time. So I though maybe there could be a connection. Went to the doc yesterday and got some antibitotics. His healthy but I asked him to try this so that I can clearly see if his tics improved because he was tired or it was the antibiotics that worked.

 

I also asked the doc to check his magnesium and TSH as he does sweat like crazy and hasa fast heart beat. Not sure if that will show anything but i have heard that many people with Tourettes had magnesium deficiency. I have also asked him about his tics pity he says he can't quite rember how it happened he told me it started with sniffling when he was 12, then throat clearling then when he was 16 more tics motor/vocal. So it was a gradual thing I think. His brother also has throat clearing tic.

 

His tics are mild but he does have days when they can be bad - I can never predict if they are going to be a good day or not they change every day! He told me his dad had blinking when he was a child but then they disappered when he turned 31. So maybe it could be Tourettes or PANDAS not sure? Anyway still doing some investigation!

 

We have an appointment with a DAN! doctor at the end of the month. I'm sure he has some sort of fungi or yeast thing happening because he has the dark circle and white toungue under his eyes which people say need nylasin or some other medicine to ficx up.

 

For PANDA what blood exam should we be doing? What do you mean by tires?

 

Thanks so much Faith! I appreciate your help.

 

 

quote name='faith' date='Nov 2 2007, 10:50 PM' post='18405']

Sunflower,

sure, that is certainly possible. It couldn't hurt to have the titers test if you can. However, I believe the PANDAS scenerio is usually where there is a sudden exacerbation of tics and/or OCD. Is this what you are suspecting for your boyfriend? Are his tics mild? Can he remember having sudden exacerbations of tics or is it always that way for him? Has he ever taken antibiotics or did he recently? If so, what was the effect?

 

Faith

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Sunflower,

The DAN doctor should definitely know what tests to do for PANDAS. It's a blood test that will measure a marker called "strep titers" and if it is unusually higher than normal, then it is an indication that something is amiss. But in case you are not aware, this is still an ongoing study and there is some controversy on wether or not PANDAS exists, but the DAN doctor will be able to guide you on this, as they are the type of doctor that is aware of this connection to tics. ...

 

Just to mention, when my son is sick like with a cold or fever or virus, his tics seem to quiet down to almost nothing. Some of us have noted that and have discussed this on the forum, so that could be cooincidence too, but it certainly could be from the antibiotic if he was taking them at the time. When he finished the course, did his tics return? It is also certainly possible to have TS or a mild tic disorder which gets worse during bouts of strep. Am I undersand correctly that you got antibiotics and he took them even though no illness, and tics are diminished? How did you get the prescription, just curious? (Ha, you must be in NY like me!)

 

Faith

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Hi Faith,

 

Yes he is not sick and perfectly fine. So I told him to pretend his throat hurt just to double check (I know this is not good to do and might offend some people in the post but I love him and he deserves the best in life :0) ) but we did it anyway as no one wanted to give antibiotics to us before plus many doc don't wanna hear anything about tourettes and alternative theories. I asked the doc to check some blood (with particular blood exams) work that I have been researching which seem to be connected with this issue (if my theory is correct I should find some things I'm hoping will appear in the blood test) Yes his tics have reduced, which I also had to convince the doctor to do some blood work - my theory does not revolve around strep but something else which I think I have found. but offcourse I could be wrong that’s why I'm keeping my lips closed till I am 100% sure!! As I don't want to mislead anyone or rise peoples hope. I know tourettes is a painful suject for some - my boyfriend has tourettes

 

I am fascinated with this subject which I stared researching around 4 weeks ago and have read, talked and chatted to as many people as possible. I think I have found a connection with the tics and antibiotics but do not want to post my finding till my boyfriend does some other things and blood work I have asked him to do with the doctor. His sometimes stubborn but then he tells me about not having as many tics and he begins to listen again.... I want to see how much I can reduce his tics some more with some other things I have noticed that have improved his tics (almost overnight).....I wanna double check everything and make sure it was not just an accident or coincidence....

 

will try and keep you updated faith!

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Offended? I doubt it! I for one am majorly impressed!!

Sunflower, wow, I am constantly looking for clues and connections and comparisons, and I am in awe that you are on this mission and may even have a hypothesis?!! Excellent! I am always wondering what the antibiotics do that seem to help all this (now just a reminder, my son is not in the PANDAS category) but somehow I have this gut feeling that it is not entirely a separate issue and it is a clue to how TS should or could be treated. I am way curious about what connection you are hoping to find in the blood tests....Even if this does not pan out, we are seeing that once again, love is stronger than medicine!!!

 

Faith

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wow, I just found this thread in a google search for adult PANDAS.

 

This is what I'm trying to find some more info about now. Seems there's not much research on PANDAS much less on adult PANDAS. I was always a little OCD as a child but when I was 17 my OCD exploded and I developed a blinking tic following a bout of mono and some other things. lol you guys already know my story.

 

Hey sunflower, any updates?

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Guy

my husband remembered recently that as a child he was so seriously ill with strep/rheumatic fever that his grandmother stuck him in a tub of ice while his mom was at work. he doesnt remember how old he was but prolly around 3 yo. all family are deceased so i cant check. His dad definitely had TS based on the symptoms I remember in him, and from what I have learned of his paternal grandpa, he likely also exhibited TS spectrum

 

I also think there may have been TS in cousins on my dad's side when I think back to childhood and what I now know about tics and the TS spectrum

 

however, I have wondered often about my son and whether a microbial infection triggered his TS manifestation, (he has never had strep to our knowledge, although my older son did have it once, and has no tics/ocd)

 

when my TS son was tested at Shands under Dr Murphy in 2000 we were told he did not meet PANDAS criteria, but from what I have later learned, one needs a lot more blood titres done. His throat cultures have always been -ve

 

My son had explosive manifestation of tics/OCD/depression just after his 10th birthday, dec 1999...tho we realize he had likely had some tics from infancy, and had always been prone to moods/behavioral issues. we just didnt know much about TS then and my hubby was not formally dx till after my son'd dx

 

My son does have epstein barr antibodies tho he has never had mononucleosis. and I also wonder about mycoplasma pneumoniae related to his crohn's

 

All this does make we wonder if he is PITANDS if not PANDAS undx.

 

he does respond well to monolaurin, the natural antibiotic, from lauricidin found in coconuts which he uses periodically tohelp re the crohn's stuff

 

I also wonder whether maybe my hubby's own TS was triggered by that childhood infection ie could he have had PANDAS? and how did that maybe affect his sperm?

 

lots of questions but no answers :wub: just thought I would throw them out there to add to your research

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For example caught PANDAS as a young child but was never effectively treated and then the tics continued into adult hood?

 

This is the changed "baseline" (brain damage/basil ganglia) theory that I and others (...P. Mom?) worry about...chronic (eg years) untreated PANDAS causing a "baseline" change resulting in a chronically tic-ky/tourettey adult or other changes (adult OCD). And now as adults, will they respond to antibiotics?

 

Wouldn't it be great to know how many adult cases of tourettes would or would not exist if there was no such thing as strep?

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Just some info. to add to the pot. My husband has mild tics. When my son had a dramatic onset, I somewhat ruled out PANDAS for whatever reason because of my husbands situation and because we had seen a few minor tics in my son before. Anyway, I spent about a year trying to nail down if my son had PANDAS or Tourettes. I have had his titers tested many times always in the normal range. We check every month or so and they are going down from his second episode of what I believe to now be PANDAS. They were normal, yet declining anyway. So perhaps what Buster explained fit my son. He responded to antibiotics at first. His pediatrician would only prescribe a 10 day dose here and there and he always seemed better. Well when we finally found a doc. to prescribe propholactly, they aren't working as well. (6 months after episode). Although they seem to reduce quite a bit, the symptoms still wax and wane following even a small cold. We had our second phone consult with doctor K and I posed the question as to whether my husband was PANDAS as an adult. He said did he have fears? We think so although his mom has passed away. He is claustorphobic now so yes, probably. That is a good indication. We have decided we will probably go with IVIG and I asked Dr. K "What if it is Tourettes and not PANDAS?" He said he is not so sure they are separate things. So, maybe we have different triggers (some shots, some illness like strep throat), but perhaps it is not completely separate?

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I had chronic strep throat growing up as a child; sometimes the antibiotics couldn't get rid of it. I do believe my ts is genetic, however, after reading everything on PANDAS, I do think there is still a link between the two. When I am sick (depending on how ill), I will tic less frequently simply because I think my body is tired out. I was on antibiotics for, what seems like my entire childhood into adulthood, and I don't remember the antibiotics affecting me in a positive way. I wonder if I just have built up a resistance to them. Is there any evidence that if you treat PANDAS immediately you may prevent a life-long coarse of ts?

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I wonder if there is anything to be learned by differentiating those who tic more when viral and those who tic less. My son was "inspired to tic" by a vaccine. After the initial explosion, he now only has mild tics when becoming ill.

 

I have read many others say that tics stop in their tracks when ill. I guess it could still be immune modulated, but we could at least observe under-responsive systems vs. over-responsive systems.

 

Guy, have you noticed any reaction to colds or flu? More or less?

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