PacificMama

I’m glad to see that Dr. T continues to explore how lyme may factor in to some of these cases. I’m not sure I would call it “lyme-like”, as much as I’d just call it lyme. As another poster mentioned, there are about 300 strains of the borrelia bacteria – so it’s quite a diverse pathogen that produces a wide variety of symptoms. Clearly, our kids have immune dysfunction and may very well be loaded down with an assortment of things. I do not think it is a stretch to think that some of them may have lyme and strep? Or just lyme? Honestly, I see many descriptions here that just scream lyme disease. Some of you even mention pulling ticks off of your kids… and yet there seems to be resistance to even considering lyme. Why? For those of you especially with kids with joint pain (knees especially), this is a classic lyme symptom. For those of you who live in endemic areas, this should absolutely be your first consideration! New England is thick, thick, thick with infected ticks. The whole upper/mid east coast is endemic. The upper Midwest. Northern California is very endemic, along with the pacific northwest. But it is found in every state. Go to the lyme boards… see how many people there are posting from Iowa, Florida, Texas… Google your state’s name plus lyme and see what comes up. This is the most common insect-transmitted disease with nearly 200,000 new cases each year – so it’s not exactly an impossibility. I’ll say it again: LAB TESTS ARE NOT ABLE TO RELIABLY DIAGNOSE. As Dr. T has said, the most important thing with any of these cases on the PANDAS board is that they are antibiotic responsive – that’s what they have in common. Finally, there is one very good reason why you should consider lyme, even if you’ve had a “negative” test: There are many doctors out there who actually know how to treat this, and which antibiotics to use, and how long to use them for. Many of you are getting results with abx, but then hit a stall, or your doc is unsure what to do, or they refuse to continue abx. But what if you would just consider that it may not just be strep, but something more, and got to a doctor who was well versed in the proper abx combos to beat this thing down. Lyme is an uphill battle, certainly, but it is a well-documented disease with a reasonable amount of practitioners with years of experience knowing what works. If it is even a possibility, you should pursue it BECAUSE YOU WILL GET TREATMENT FOR YOUR CHILD. In my daughter’s case, she was on long term abx – mostly a combination of omnicef and zithromax. Occassionally we’d change them up, but this is predominately what worked. Later, her doctor added in Tindamax 2 days a week (called pulsing), and this really put her up and over the top to symptom free. (we did other things with supps, etc. as well). I mention this to say that a doctor who knows the abx combos makes all the difference in the world! I’m certain our daughter would be institutionalized today without her doctor. For those who are curious, maybe you could get your doc to order up tests to be sent to one of the better labs, like Igenex, that test for all the lyme bands with much better accuracy. Maybe Dr. T will write you’re a script to have these tests run? I know the pain of trying to heal your child, and I sincerely send you all my heartfelt best wishes. Mary I will post lyme symptom list below.

I just thought I would post an interesting coincidence from yesterday. I get regular postings via email from a lyme parents group (these are all people whose children are receiving treatment for lyme and/or infections such as myco, bartonella etc.). There was an initial posting from a mom asking parents if their children regularly test positive for strep (strep A in her case), as her children regularly did. Several people posted back that yes, their children also regularly tested positive for strep. Just wondering about the connection… and the possibility (that has been raised here before) that some of our kids are loaded down with multiple infections. (I do not know the details of Dr. Cunningham’s study, but would also be interested on thoughts as to how active lyme (or similar) infection would also affect CamK). Since I am one of the voices here representing non-strep infections causing tics/ocd (known to some as PITAND), I wanted to post some brief information for anyone who is still sorting through the potential triggers (but has likely eliminated allergies/diet/environment/hereditary). Neuropsychiatric manifestations of lyme disease have been well documented, researched and written up for many years now. These symptoms include OCD, rage, cognitive deficits, memory problems, anxiety, sleep disorders and on and on. For all of the doctors out there on the front line treating lyme and these other infections, this is all very commonplace and not at all unusual. Symptoms can resolve or improve with the correct combination of antibiotics, given for the appropriate duration. For anyone out there whose child (or themselves) presented with any of these symptoms – particularly following some sort of initial illness of any kind -- please take a look at the following 2 links. Your symptoms may have had sudden onset, or appeared slowly and increasingly. There may or may not be other physical symptoms in addition to the neurological ones. To see a list and links of just how much literature exists on neuropsych lyme: http://www.lymeinfo.net/neuropsych.html To see a short, 2 page brochure put out by ILADS (International Lyme and Associated Diseases Society) for psychiatrists called “Psychiatric Lyme Disease: What psychiatrists should know about lyme/tick-borne diseases”. (A quick diagnostic overview.) http://www.ilads.org/lyme_disease/Psychiat...chure_08_08.pdf *************************************************************************** Lyme is transmitted via a tick bite, and is the most common and fastest growing vector borne disease in the United States (and Europe). While there are certain endemic areas, it has been documented in 49 states. There are 20,000 newly documented cases each year per the CDC, but this number is probably closer to 200,000 new per year due to faulty reporting standards. Other tick-transmitted infections are mycoplasma, bartonella, babesia, Ehrlichiosis, and rocky mountain spotted fever. (Mycoplasma is also transmitted via other methods). Many people who have lyme disease never remember a tick bite, and a ring rash never appears in over half the cases. Lyme can be transmitted in-utero from mother to child. Western Blot TESTING IS VERY INCONCLUSIVE – especially if not done at one of the recommended tick-borne disease specialty labs. A clinical evaluation by an experienced practitioner is necessary.

Fixit, I'm short on time right now, but wanted to post that since you have removed ticks from your son, you absolutely positively must have testing/evaluation done by a knowledgeable doctor. Ticks carry all sorts of infectious disease -- lyme, mycoplasma, bartonella, babesia and others. Contrary to popular belief, a ring rash is only present a small percentage of the time. A person may show symptoms immediately, or much later. Especially when later triggered by an illness (including strep). All these diseases have the potential to cause the symptoms you have listed. Testing is so tricky and inconclusive, that's why it's important to be clinically evaluated by a knowledgeable doctor. Please go to the following lyme message board I have linked here, click on "seeking a doctor" and post a short message with the geographic region you are searching for (most people post by state), and you will get a reply with suggestions for doctors in your area. http://flash.lymenet.org/scripts/ultimatebb.cgi I don't want to hijack this thread with lyme discussion... if you have more questions you can post a new message or pm me. Good luck.

QUOTE(PacificMama @ Feb 28 2010, 09:02 PM) Tomorrow time permitting I will attempt to gather cites for steroid use in myco. In the meantime, this is a recent article about mycoplasma that is fascinating and one of the best I’ve seen. It is an interview with Dr. Garth Nicolson who is the person who made the connection of mycoplasma to gulf war syndrome – as he himself suffered from myco. It has lab/testing recommendations, and treatment suggestions. (while the article title relates myco to coinfection of lyme, the article itself is really just about myco). Again, it’s highly recommended. http://www.immed.org/infectious%20disease%..._0709_v4.07.pdf Peace. This is an interesting article, and am glad to see the part on there about waiting at least 2 hours before taking the pro-biotic (I did not know that!). I did notice, however, that this article is focusing primarily on Mycoplasma F, which tends to be the co-infector with Lyme. My dd has the Mycoplasma P....I think it is a totally different strain and tends to be what a lot of the PANDAS patients are presenting with that possibly do not have the strep connection. -------------------------- Yes, the article focuses on myco f, but does discuss both f and p -- and both are indicated in causing neuropsych symptoms. Myco is very fascinating, and I'm sure we will continue to hear more about it. The good news for you is that myco p seems to be more readily treatable than myco f. Glad you found out about 2 hour rule with taking probiotics and abx... so important to not cancel each other out!

I certainly did not mean to start something here… Yes, it is INCREDIBLY DANGEROUS to take steroids if you have an infectious disease. I sincerely hope that people really get this: taking steroids could result in serious and permanent damage. Steroids suppress the immune system, which allows bacteria to take hold. I feel like I have to offer my support to Chemar here. While I have not been a longtime poster, I see enough to know that she must put in an incredible amount of her time to help us all find answers. And she always seems to be respectful and open to people’s ideas. Absolutely, any doctor that is willing to defend the idea that there is a physical reason behind neuropsych problems is to be commended. However, I do find it alarming to see Dr. K so readily recommending steroids. And I can say this from personal experience as we have consulted with him. I don’t want to initiate an argument as to Dr. K – he indeed has been helpful to many. However, he is out of his league when it comes to dealing with infectious diseases such as mycoplasma, lyme, etc. – and is quite dismissive of the role they may play (despite the fact that he give PITAND some allowance). Anybody here who suspects they may be dealing with an infection other than strep should seriously consider seeing a doctor who is more experienced in treating these infections. This is labeled the “PANDAS” board. However, the bigger umbrella label is “infectious agent that causes basal ganglia dysfunction”. It might be strep, it might be myco, it might be lyme, etc. I get a little frustrated when I see people so quick to tell a new or inquisitive poster “sounds like PANDAS”. All of these infectious agents cause nearly identical symptoms as it relates to neuropsych symtoms. And the disease presents itself it very similar ways: such as sudden onset following an illness, etc. People who aren’t positively sure it initiated with a strep infection need to consider every other possible infection. And they are much more common than people might imagine. I don’t even pretend to have this mastered. Mycoplasma is very often found as a coinfection to lyme, bartonella, etc. Mycoplasma is often found in people sufferering from any number of autoimmune diseases. People with lyme often complain of recurring strep infections. And on and on go the connections. As others have said, it would be so beneficial to get all the experts from all the divergent fields together in one room. Tomorrow time permitting I will attempt to gather cites for steroid use in myco. In the meantime, this is a recent article about mycoplasma that is fascinating and one of the best I’ve seen. It is an interview with Dr. Garth Nicolson who is the person who made the connection of mycoplasma to gulf war syndrome – as he himself suffered from myco. It has lab/testing recommendations, and treatment suggestions. (while the article title relates myco to coinfection of lyme, the article itself is really just about myco). Again, it’s highly recommended. http://www.immed.org/infectious%20disease%..._0709_v4.07.pdf Peace.

Because the original poster here mentioned that her dd was now confirmed positive for mycoplasma, I want to add a cautionary note that steroids can be very harmful if a person has myco. Please, anyone who is unsure what is at the root of their, or their child’s, tics/ocd should proceed with EXTREME CAUTION using steroid treatment. They can make things much worse. This would be true as well for suspected lyme, bartonella, babesia – perhaps other pathogenic organisms. Also, I want to add for any who aren’t aware, when you have myco, lyme, or other infections mentioned above: When you begin antibiotic therapy you may have what is called a herxheimer reaction – this is a period of worsening symptoms due to the die-off. You should then begin to see improvement (given that you are on the right combination of antibiotics). I believe that treatments such as IVIG may also be used when antibiotics are not offering complete cessation of symptoms. Most often, the right combination of antibiotics administered by a really knowledgeable doctor will make vast improvements in symptoms. (and I am all for moving from antibiotics in the critical stage to other natural treatments later -- but just wanting to make the point about initial antibiotic treatment). The neuropsych symptoms from myco, lyme, etc are nearly identical to strep-triggered PANDAS -- and may or may not present with other systemic symptoms (joint pain, etc). If you are at all suspect of having any of these infections, please find a doctor who is familiar with successfully testing and treating them. Sadly, they are few and far between, but they are out there.

Hi, I just wanted to offer an opinion from the lyme side since that is something you said you want to rule out. If a person does have lyme disease, steroids are very harmful and can make things much worse. As for lyme testing, you will want to skip ELISA, and go straight to a Western Blot test. Best labs for this are Igenix, and Clongen. Insist with your doctor to use one of these labs. And remember, lyme testing is absolutely inconclusive. A positive test (that is, CDC positive) is usually reliable. However, a negative test does not rule out lyme. Lyme is a clinical diagnosis (as per CDC and every other authority). That is why it's so important to have a doctor who is very familiar with lyme, and reading test results, to make the call. Hope that helps.

Hello Dr. T, I saw your post and wanted to respond. After an extended absence I have been back on the board reading/posting the past couple of weeks. My daughter contracted lyme disease about 5 years ago at the age of 2. She did indeed develop lyme-associated OCD -- it would come and go throughout the course of her treatment (long term abx), but almost always resolved itself with abx treatment. I'm not sure why you say lyme OCD is not common. It is my understanding from her doctor that it is indeed quite common. He has treated about 8,000 lyme children since the 1970s, and he has always explained that OCD/tics are not at all uncommon in lyme patients. As for band 41 -- yes, my daughter has always tested positive (there were other positive bands). IGG always positive, sometimes IGM is postive or inderterminate. In the lyme world, there is much written and discussed about why so many people turn up with only band 41 positive. My understanding is it is usually the first band to show up positive after contracting lyme. I am going to copy a post below about this very topic by a lyme MD. It gives his explanation as to why this is. I think your findings are very interesting. I think it would be so very beneficial for you to contact the lyme pediatrician mentioned above. He is THE pediatric lyme doctor, and is visited by patients from all over the US and world. He has records from 8,000 pediatric patients, and a wealth of knowledge about lyme testing and diagnosis. Please PM me and I will give you his contact info. I know he would be very willing to talk to you, and be interested in what you are finding as well. Thank you for your interest and dedication! ---------------------------------------- here is copy of another lyme MD's post about band 41: All I got was 41 Band! The 41 band is non-specific. It is meaningless by itself. Haven't we all heard this. It cross reacts with other spirochetes. Maybe not. Early studies, with Allen Steere as a co-author, showed that the 41 band was the band that was most prevalent and showed up earliest in the course of Lyme infection. The CDC considers it specific. It is one of only 3 IgM bands tested in their surveillance test. IgeneX considers it specific, it is marked with a double asterisk. I have reviewing the literature. Cross reactivity studies were done with syphilis. This does occur. How many syphilis patients have I seen in suburban practice in the last 20 years? One. Syphilis is easy to rule out. What about other spriochetal diseases? Yes. It can cross react with leptospirosis, rat bite fever and relapsing fever. What did Steere have to say? These diseases can be ruled out by clinical presentations. Not out only are these diseases very rare, but they cause a severe, sometimes life threatening illness which clinically looks nothing like Lyme. I am quoting a paper co-authored by Allen Steere, circa 1984. Current papers like to say that the 41band cross may reacts with dental spirochetes. Does the evidence support this? The answer is no. The primary dental spirochete is Treponema denticola. It is present in patients with periodontal infections. It is not particularly antigenic since it is protected within biofilms. The DNA structure of this spirochete has been worked out. It is very different from Borrelia. The 41 band reacts to a flagellum protein of Borrelia, the Lyme spirochete. The flagellum proteins of T. denticola are quite different from those of Borrelia. They are antigenically different. This was tough to find, but here it is: The WB or immunoblot bands that are specific for T. denticola flagelin proteints are: 38kd, 53kd and 72kd. In fact, the best known dental spirochete does not react with the 41 band. Author after author continues to state that the Lyme 41 band may occur beause of cross reactivity with dental spirochetes. It is always qualified with the word "may." There is no evidence to support this theory. All are in agreement that the 41band is specific for spirochetes. The other spirochetes known to cause this cross reaction can easily be ruled out! To quote Carl Sagan: "When all the likely causes of an effect have been ruled out, then that which remains, no matter how unlikely it appears, must be the truth." You only have a 41 band. The only question which has to answered is: How do you explain its appearance if it not due to Lyme disease?

Gat's Mom and Mati's Mom... please keep us posted. I'm curious to hear what you discover. (Gat's mom... did you also make sure his phone was turned off?). I think I'm going to throw the breaker to my own bedroom this weekend and see if I get a little more restful night's sleep!

Michael: thanks for the excellent explanation -- and clarifying the diffent types of emf (wireless devices; and general electrical current and appliances). Don't forget the power lines leading into a person's house. I have ordered a meter to measure our house, and am waiting to receive it. I'm very curious to see where the hot spots are! Most particularly, I'm worried about my daughter's bedroom, and may go ahead as suggested by someone else and flip the breaker at night to shut off the power to her room. I'm also going to check with our next door neighbors to see if they are running a wireless router at night. I think given all the various exposures we encounter during the day, our sleep environment should be as much of a sanctuary as possible to allow our body to heal and restore itself as it is meant to during sleep. And by exposures, I don't just mean emf's, but toxins of all kinds.

Hi Mom04, I saw your mention of lyme and wanted to post because I am one of the parents here whose child has/had lyme disease (there are other parents that post on this board and the PANDAS board). Yes indeed, lyme can most definitely cause tics and OCD behaviors as well. For many years I haven taken my daughter to a pediatric lyme specialist, and he has always confirmed that this is not at all uncommon in lyme kids. I think given the fact that your husband has had it (and possibly from your yard!) that you might consider getting your son tested. Although you may know that blood tests are not definitive, and so you need a knowledgeable doctor to make a clinical diagnosis. Long term antibiotics will treat the lyme, and the tic/ocd behaviors usually fade mostly away. There are many wonderful people on this board who have incredibly helpful information to share. I would also recommend that you consider what other environmental cause may contribute to his behavior, such as food or enviro allergies. I have another daughter who has food allergies, and I know from expererience that these can trigger many of the behaviors you have described as well. Please consider reading Sheila Rogers book: http://www.latitudes.org/book.html Best of luck.

Hi Everyone, Thanks for your feedback. I think EMF sensitivity is an issue that we will see increasingly referenced. I have learned so much in the past week! Here is a link to some articles that appeared on the Latitudes forum. It's a bit dated, but interesting. http://www.latitudes.org/articles/electric...y_articles.html Of particular interest to me is that EMFs create permeability in the blood brain barrier, and this in turn allows toxins a pathway to the brain. There are many articles studies out there that discuss the ramifications of this. My daughter is particularly sensitive to toxins, chemicals, etc (in food and environment), and these can be a trigger for her tics/ocd. For the past couple of years I have thought of her as our "canary in the coal mine" -- her behavior alerts us to those things that are not good for any of us. Perhaps the same is true of her EMF sensitivity. Her initial problems with tics/ocd were triggered by lyme disease, and so it has been PANDAS-like in that it has been controlled by antibiotics. However, after spending nearly half of her short life on antibiotics, we are now off them at this time. Otherwise, the behavior can be triggered by toxins/chemicals (in food or environment). She is a super-sweet girl, but through it all we've never really found anything that works to eliminate her quick anger/rage tendancies until this accidental discovery.

Hi Everyone, Thanks for your feedback. I think EMF sensitivity is an issue that we will see increasingly referenced. I have learned so much in the past week! Here is a link to some articles that appeared on the Latitudes forum. It's a bit dated, but interesting. http://www.latitudes.org/articles/electric...y_articles.html Of particular interest to me is that EMFs create permeability in the blood brain barrier, and this in turn allows toxins a pathway to the brain. There are many articles studies out there that discuss the ramifications of this. My daughter is particularly sensitive to toxins, chemicals, etc (in food and environment), and these can be a trigger for her tics. For the past couple of years I have thought of her as our "canary in the coal mine" -- her behavior alerts us to those things that are not good for any of us. Perhaps the same is true of her EMF sensitivity. Faith: my daughter is mostly doing well these days. She has had major episodes of tics and ocd during her sickest time with lyme, and during a relaspse last year (which I think was triggered by 5yo immunizations). She does have one current tic behavior, but so far it is manageable. She is the sweetest kid, however she has long been prone to a quick temper and angry outbursts. We've never managed to eliminate this with all we do. Until now, when we unplugged the cordless. MichaelTampa: Sorry to hear that you have had to take disability. I am now investigating products that supposedly minimize the effects of EMF. It all seems kind of crazy, but I'm hoping they do indeed work. Have you seen these? You could google "no emf products" and lots will come up. As far as my daughters lyme, she is holding her own at this point. She contracted it at 2yo, and was very, very sick until she was finally diagnosed at age 3. She was on antibiotics for nearly 2 years. Fine for a year. And then relapsed (I think triggered by immunizations). So back on antibiotics for 1.5 years, and now off again. So much controversy about lyme treatment! Her doctor does think it can be completely eliminated, but others believe the bacteria may never be fully erradicated -- you just beat it down as best you can and hold it at bay with a strong immune system. (I think this is what I believe after all our experiences). Her tics/ocd are consequently kind of PANDAS-like, but I'm still sorting out/learning what I think is the case. In any event, we keep her diet clean (always worried about yeast), and her life as non-toxic as possible. Aside from one minor tic right now, she is good. Find yourself what is called a "lyme literate" doctor and get yourself tested/evaluated. Good luck.

Hello, I only post here occasionally (I should do more!), but I continue to find this forum, and all of your advice, to be invaluable. I just wanted to post about a change we have made that has affected my daughter’s behavior quite dramatically (her background below). And I am curious to hear others experience’s / comments. (I will post on both Tourette’s and Pandas forums). About 10 days ago I disconnected/unplugged our home cordless telephone system. I did this because sadly another friend of mine has developed terminal brain cancer and I decided to go back and use the “old fashioned” corded phones only (and severely limit cell use). We also only very occasionally turn on a wireless router. Anyway, after several days I realized that my daughter was no longer having her daily (or multi-times daily) rage and anger outbursts. I mean NONE. This has never happened, and it completely coincides with our unplugging the cordless phone (which she used to sit near in the kitchen area). She has been the most complacent and sweet natured kid EVERY DAY. I can not tell you how amazing this is. For myself and my husband, we can say we notice that we feel “better/calmer” in some slight way, but for my daughter the change has been dramatic. I see that there have been a couple of other posts here about EMF (electromagnetic field) sensitivity, and I have been researching extensively since noticing a correlation. Apparently EMF creates an opening in the blood brain barrier. They disrupt neurocognitive functioning, disrupt neurotransmitters (serotonin etc.). People who are chemically sensitive are likewise more sensitive to EMFs. Please let me know what your experiences may be. Also, please consider unplugging your cordless phones, home wireless systems and turning off cell phones in the house for a few days and see what reactions your or your children have. Thanks for reading! [background---- my daughter is nearly 8yo. She’s had a long battle with lyme disease that’s left her with a propensity for tics and OCD. She goes through periods tic-free, but at other times they return to varying degrees. We’ve been on long term antibiotics, but are off now. She’s quite chemically sensitive, and we have great luck when we really watch her diet and limit as much toxic exposure as possible.]

Hello, I only post here occasionally (I should do more!), but I continue to find this forum, and all of your advice, to be invaluable. I just wanted to post about a change we have made that has affected my daughter’s behavior quite dramatically (her background below). And I am curious to hear others experience’s / comments. (I will post on both Tourette’s and Pandas forums). About 10 days ago I disconnected/unplugged our home cordless telephone system. I did this because sadly another friend of mine has developed terminal brain cancer and I decided to go back and use the “old fashioned” corded phones only (and severely limit cell use). We also only very occasionally turn on a wireless router. Anyway, after several days I realized that my daughter was no longer having her daily (or multi-times daily) rage and anger outbursts. I mean NONE. This has never happened, and it completely coincides with our unplugging the cordless phone (which she used to sit near in the kitchen area). She has been the most complacent and sweet natured kid EVERY DAY. I can not tell you how amazing this is. For myself and my husband, we can say we notice that we feel “better/calmer” in some slight way, but for my daughter the change has been dramatic. I see that there have been a couple of other posts here about EMF (electromagnetic field) sensitivity, and I have been researching extensively since noticing a correlation. Apparently EMF creates an opening in the blood brain barrier. They disrupt neurocognitive functioning, disrupt neurotransmitters (serotonin etc.). People who are chemically sensitive are likewise more sensitive to EMFs. Please let me know what your experiences may be. Also, please consider unplugging your cordless phones, home wireless systems and turning off cell phones in the house for a few days and see what reactions your or your children have. Thanks for reading! [background---- my daughter is nearly 8yo. She’s had a long battle with lyme disease that’s left her with a propensity for tics and OCD. She goes through periods tic-free, but at other times they return to varying degrees. We’ve been on long term antibiotics, but are off now. She’s quite chemically sensitive, and we have great luck when we really watch her diet and limit as much toxic exposure as possible.]

Hello, I have not posted in a while, but have been back recently reading posts. I will give an update in another post -- I have a young daughter dealing with lyme induced tics (and slight OCD). I originally posted here not knowing the cause, but she later tested positive for lyme (and this is something that we previously dealt with a couple of years ago). I was wondering if anyone here saw the one hour special program last night on ABC's 20/20? It focused on teenagers with tourette's. What did you think? Here is the link to their web site, where you can watch the full program (they have it divided into several different segments). http://abcnews.go.com/2020 Regards, Mary p.s. Thank you so much to all of you! I have learned so much here, and in Sheila's book.

Thanks for the additional replies. Diana (or other PANDAS parents): How long until one should see some improvements on the antibiotics? She has been on zithro and omnicef for 8 or 9 days, but I honestly don't see any difference yet. Thanks.

Thanks for your reply. My instinct tells me it is something environmental that is causing this (as opposed to lyme or PANDAS). But would a child who has never had tics before wake up one day and start exhibiting such a complex tic behavior (the dance, the repetitive phrasing)? I will also look into the yeast possibility. Anything else you have to offer would be greatly appreciated.

Hello, So happy to have found this board. I have also just purchased the tics and tourette's book by Sheila Rogers and started reading it. Background: My 6 year old daughter contracted lyme disease when she was about 2.5 years old. She was not diagnosed until she was 3 years old, with a positive test. She then was on antibiotics for 2 years, and it was stopped when she had been symptom free for several months. During her illness/treatment, she would suffer occasional bouts of OCD (no tics), which always disappeared with the introduction of antibiotics, or a change in her protocol. Her lyme doctor said OCD is not uncommon in lyme kids, and it would likely disappear for good when the lyme was eliminated. Her antibiotics were discontinued in March 2007 when she was 5 -- we have not seen lyme symptoms or OCD since. Currently: About 2 weeks ago she had a sudden (it seemed) onset of a complex tic manuever, what I believe is the St. Vitus Dance (putting her hands in bear claws, hunching over, and squatting down or doing a little jig. A couple of days after that she started uttering a simple phrase repetitively when she would do this movement. Otherwise, she seems perfectly fine and is in good spirits, sleeping well, etc. While this came out of the blue, there may have been shades of this behavior beginning a few months ago when she started to "freeze" for a couple of seconds occasionally. We thought she was joking around. Triggers?? PANDAS?? There are so many new things in her environment right now: We moved across the country 6 weeks ago and are in a new house; Water here has lots of chlorine and is flouride treated (new for us); Lots of pool swimming; She fell off her supplement regimen (multi, calcium/magnesium, and probiotic) but is now back on; Right before this behavior started, we had our basement floor painted with oil based paint (much to my dismay). It is still noxious. For those of you with chemical sensitivites, could they really cause this sort of complex tic in a child who otherwise has never had tics? I would say that she might be chemically sensitive in that she can't tolerate certain chemicals on her skin (rash), and even is very sensitive to mosquito bites. I othewise use all natural/non toxic cleaners and products for their bathing, etc. Re PANDAS: It also occured to me that this might be some sort of PANDAS reaction from her lyme disease. I did a phone consult with Dr. K in Chicago who thought it might be possible she is PANDAS (from unknown strep). I had her ASO checked this week (fine), but have not yet been able to have a dnase test done. Her lyme doctor thought it might be remnants of lyme, and is going to check her out but did start her back on antibiotics 4 days ago. We have seen no real improvement. So I'm not so sure about the lyme or PANDAS theory. (although she somewhat fits the behavioral profile in terms of occasional moodiness or being quick to snap. HELP PLEASE: I am wracking my brain trying to consider what has triggered this. Mostly, I am wondering about your experience with a complex tic movement and vocal tic, and if that can happen because of an environmental trigger (I know it's a symptom of PANDAS). THANK YOU!