MichaelTampa

Just want to add my perspective/question on "obsessive need to pee". I match so many of the symptoms, including urinary frequency and lack of control, and I strongly believe I have PANDAS. I haven't had any strep tests and am waiting for the CamK number from the Cunningham Study. I have had the urinary frequency since childhood, as long as I can remember, and I'm sure I have many things where "obsessive need to" applies, but I find the phrase "obsessive need to pee" strange, at least for my circumstance. It's a real physical need, and can only be held in so long. Are there actually kids that don't physically need to pee but do feel some obsessive need to pee? Michael

Boy, that is a tough question, and I would like a time out once I'm done doing my best to answer it. First of all, I want to say that the dynamics are very different for me. A lot of the time in my relationships where this might occur (whether we're talking family or work or whatever), I'm in a much more dominant position than a child is. Poor children are always being told what to do and what not to do. I sometimes have the attacks of rage, and I think, less occasionally the attacks of irrationality. Perhaps there are situations where there are both, and maybe in some way a person could look at them as the same. For example, is it irrationality when you're not in control and just being told the bad news or given the demand you don't like. And then, is it rage when you're in control and can do whatever you like. The more I type it, the more I like that story. I think as I look back at, yes, I absolutely did know I was being irrational when I was being irrational. But I was so distraught about what I was hearing that I had to make it sound like it was such a big deal, I had to make the person understand my pain, I had to and I had no control and I couldn't help it. This actually happened a few months ago on the long trip back from Dr. Sims, was so upset that my wife passed up the one hotel set of exits (she wanted to go further that night), and then we were having trouble finding an acceptable one where she did come off (only after I finally whined enough), that I got so upset I said (by "said", I probably mean something more like "screamed like a person who had just totally lost touch with reality and reasoning") that we would need to go back to the hotel we stayed at during the way up to see Dr. Sims (an hour on the highway in the complete other direction that we had just passed). Following that, I lost all bargaining power for the rest of the night as she kind of decided she couldn't count on me to be rational. And yet, if I was driving I would not have driven back an hour, but I said it like I really believed we should, and I knew that was a bad idea, one I didn't even like, but I had to say it, I had no control. I think I said it internally first and did not know it was irrational then, and then shouted it out, and then knew it was irrational. So, there was a very short period where I didn't know it was irrational. I think this has a moral component to it, like we needed to do that to correct whatever wrong was done (as I perceived it, by skipping the exit I wanted). Gosh, though, I'd be really careful calling somebody on that. The poor person really just wants to be heard. The best thing she could have said right there was, "I'm so sorry, you must be feeling so tired, I'm sorry we're in this position we're in now, I'll do my best to [get you a hotel that you will find acceptable][generally--make the situation as bearable for you as I can]. I have had rage attacks where I have done physical violence (people, things, you name it), and it has happened so fast that I didn't realize it was wrong until I did it, I was just that mad, they deserved it, or whatever. There have been some times where I have had rage attacks and done physical violence on things where I did realize it was wrong before I did it, but I did it anyway, it is a difficult question to ask whether I could have stopped it. Would some say the fact that I didn't stop it mean that I couldn't stop it? I was too mad to care about right and wrong, and I cognitively knew it was just a thing and it wouldn't be too bad, heck, it could be replaced/fixed. I did have a long-lasting rage attack once where a big bully threw a ball at me and hit me, and I rode my bike back to get a knife to show him he shouldn't do that. I met up with someone along the way who kind of gave me the "hmmm, you sure you want to do that", and I said, "yes, he shouldn't do that". And I did go back and confront the bully with the knife. At some point, during those 20-30 minutes of rage between the ball-hitting and the knife-bully-confronting, I absolutely became aware of the idea that this could be very harmful for me. I'm not sure I considered it irrational. I give more weight to what is moral than most, and that was an example of that situation, the bully must understand, the bully should not do that, and so on. I think the psychologists and psychiatrists would say that is part of the OCD that is part of PANDAS. So, in the end, with the rage, I still "knew" I was doing the right thing, the situation deserved it, and that was that. These are all examples, there are others, but I think the mechanics (for me, anyway) are all really the same. Hope that helps. Michael

Tina, To pursue the structural side in Detroit, I see a couple of ideas. 1. Find a TMJ dentist for the appliance. There must be a number of them in such a large area. 2. Call the St. John-Clark Pain Treatment Center, in Clearwater Florida, and ask them for a referral in the Detroit area. They have created another approach to structural issues and have trained people in various parts of the country (don't know about Detroit). They have successfully treated Tourette's by addressing bone alignment issues and muscle tension issues. They work on the whole body, including the head, and including issues causing TMJ and that would be treated by a TMJ appliance. I view this as more holistic and complete than just getting a TMJ appliance, but it could also be more time because of that. Perhaps not as bad for a child, though, where bones aren't stuck in the wrong place for years and years. Michael

Powerofprayer, Yes thank you! Have you reviewed the PANDAS symptoms (such as on the webpediatrics.com website, or elsewhere), and do you feel your symptoms fit more as PANDAS or more as TS? Yes, those antineural antibodies are being taken to see if they can figure out if they mean anything. Right now, it's anybody's guess if they mean anything at all. Michael

What? You don't think my name is secret enough? LOL On the one hand, perhaps the Michael and Tampa in the name are a bit of a give-away. On the other hand, I haven't run across anyone, ever, who has had a similar symptom profile as mine, or who has had such a patient, when you consider the adulthood and the severity of the fluorescent and wireless and perfume issues. That part shows, maybe, you can pick whatever name you want, but the discussion identifies you as well. Anyway, selfishly, I'm with faith in terms of that being too confusing! Michael in Tampa, Florida (but willing to visit doctors anywhere if necessary and practical--look out, I'm coming!)

momofgirls, Thanks for the information. Could you tell me the timing of the normal titers versus the steroid/abx/ivig treatment? Could the titers have gone to normal as a result of the treatment? Dr. Kovacevic’s website webpediatrics.com, which discusses PANDAS a great deal, is the place that says his experience is it doesn't really help after puberty. Not sure what other doctors think. No, I have not tried a steroid burst, really am going to wait for the CamK number before getting with a PANDAS doctor and then seeing what they recommend. I have heard the steroid burst can be dangerous for those with TS, so I would consider that carefully before doing. Michael

I'm not sure if I would characterize it either way. I started by telling my situation, that I am an adult, but am interested in testing, and she replied that they have not included adults in the study, but if I want to be tested, that's fine, and here are the steps to move forward. So, I didn't really have to beg or anything, nor did she have any curiosity that she expressed. It was all pretty matter-of-fact. Michael

Just received this. I communicated with Kathy a day or so ago, and looks like we are still a couple weeks away from getting the CamK number. Anti-Lysoganglioside 2 hours patient 160 positive control >1280 negative control 160 normal range 80-320 normal mean 147 Anti-Tubulin 2 hours patient 250 positive control 8000 negative control 250 normal range 250-1000 normal mean 609 Anti-Dopamine 1 2 hours patient 500 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 As I try to read this, it reads a lot like all these measurements are pretty normal. As a reminder, I am 42 years old. Since the IVIG is not supposed to work after puberty, I can only wonder how these numbers, and the CamK number, might be impacted by puberty. I do believe Dr. Cunningham said they had not tested any adults yet, so I apparently could be the first. Truly, don't understand enough to do more than simply wonder. I do have a very large percentage of the symptoms as listed from Dr. K.'s website, and have had them since childhood. Yet, the fluorescent lights sensitivity and wireless sensitivity does seem off the chart so as to wonder if it is still really something else going on with me. Truly, has been the life story, of never fitting in to any neat boxes, although I feel I got lots and lots closer with the TS diagnosis a year ago, and did feel closer still to match up with all the PANDAS symptoms a week or two ago. Anyone have any thoughts they want to share regarding these numbers and the struggle to diagnose me? Michael

Guy, I don't know about tics, but just ran into an anti-candida diet instruction sheet a couple days ago, and a couple foods it mentioned not to eat that surprised me were peanuts and pistachios. This was a brief sheet, no explanations, so don't know the reason, but, perhaps if candida is an issue, it would spark that an cause all sorts of problems, including tics (as it does certainly increase my symptoms and sensitivities). Michael

I am very sensitive to so many things, including additives, and, for people like this, brand name versus generic will matter because the fillers/additives/etc. will be different. The brand name is likely the one that will have been used in the studies. However, I would not go to the blanket statement of brand name is always best. I think some of this is going to be individually, what a particular person's sensitivities are. I have a pharmacy that compounds with more healthy fillers (they advertise this for autism patients), but theis can only be done with generics. Michael

I think the capsule idea is excellent for those who can do it. I mixed it in a bit of water and it is just incredibly strong stuff, tough to take. I actually can't swallow capsules. I did take 3 before breakfast yesterday and 3 before lunch. I energy tested for that much each time. But, am curious, if taking just 3 per day, would you do just 3 all at once rather than spreading it out throughout the day? Michael

I really haven't been careful to keep straight antibiotics and antifungals and all those other bad guys. I guess now that I'm seriously caught up in this PANDAS, I need to pay more attention. But, these links read like nystatin is both antifungal and antibiotic. But then the first article goes on to read like it could be combined with antibiotics, which is different than actually being antibiotic. Hmm... http://www.invent.org/Hall_Of_Fame/75.html http://www.ncbi.nlm.nih.gov/pubmed/10873841 Hopefully the rotation is just to make sure your liver can handle it, and not so the bad guys build up immunity, like they can to the drugs/antibiotics? I have been working with an acupuncturist / doctor of oriental medicine on the candida. I have just started seeing an integrative MD, not sure what he will add to that picture. I have had the candida over a year (perhaps many years), and for some of the last year, psychiatric and other issues were more serious that candida was the least of my worries. But, I think the last 6 months, I have been avoiding basically all fruits and sugars and sweeteners and even many sweet vegetables. It would be overstating things only a little to describe the foods I actually do eat as oatmeal, brown rice, whole grain wheat and rye, broccoli, cauliflower, string beans, onions, garlic, celery, cucumber, lettuce, romaine lettuce, lima beans, basil, cilantro, parsley, canned other beans, walnuts, cashews, coconut oil, olive oil, and grapseed oil. My body just goes crazy with other things, including anything yellow/orange and known for beta-carotene (these are also sweet). But, I will admit I just learned about the no vinegar thing a couple weeks ago, not that I was having a lot of pickled things. For candida, I have been taking NOW Candida Clear, Xymogen Saccharomycin, FOS, walnuts, coconut oil, probiotics, digestive enzymes, Xymogen GarliX (garlic extract). All these steps of diet control and pills really have helped a lot, but not to the point of finishing the problem off, just making it better. Actually, feeling quite horribly hungry today, following both meals, normally a sign of a candida mistake. I did just start the oregano oil today, before each meal, and wondering if it could have been a mistake, even though my body tested good for it. Or, a strong candida die-off I have heard can feel like a step backward, but always thought those were more headaches and not so much hunger feeling (as if the candida is eating the food/nutrients meant for me). Michael

I found a number of enlightening things from this thread. I am interested in anyone's use of oregano oil. I just started taking this morning. I am not on antibiotics (at least yet). Isabel, or anyone else trying it, can you report on if you feel it was helpful? Regarding the strep/candida link, when my candida gets out of control, it does increase all these PANDAS symptoms. I read a post recently from Buster that could have explained this as any other infection causing the blood brain barrier to be weakened and this allows the bad strep antibodies into the brain. So, it could be as simple as that. But I am hearing more of candida and strep, and wonder if there is more to the story than that. Faith--if you look at that post on Dr. Semon you made and TS, that's the same guy I was mentioning to you regarding multiple sclerosis and candida--funny we both ran into that. Basically, he believes he has helped MS and TS with long-term use of antibiotics (nystatin) for candida, which seems like a familiar story, but not quite identical. Isabel--thanks for mentioning the stool test for strep. I went back and looked at 2 old stool tests I had. In 2003, with health not too bad, with Meridian Valley doing the test, I showed no lactobacillus and that was an abnormal result (that's good stuff you want some), lots of "Alpha strep" (4+) but not listed as abnormal result, and lots of "Enterobacter cloacae" and that shown as an abnormal result/pathogen or possible pathogen. In 2008, in the middle/beginning stages of severe health meltdown number two, with Genova Diagnostics doing the test, "gamma haemolytic streptococcus" shows as lots (4+), but as a non-pathogen, even with others listed as possible pathogen. Interesting it is clearly shown, they think it is worth testing but don't think it's a problem when it's there? Must say, I'm a little confused. I hear some mention of only Strep A being bad for PANDAS. Could that be what "Alpha strep" is? Michael

Thank you both for sharing. Vickie--Could you talk about what the sensory issues were that got better with your son? I am particularly interested in knowing if you feel irritability and/or rage attacks were a symptom that decreased (if they were a symptom to begin with). Yes, the general electronics can be an issue as well. I know I did start sleeping better a number of years ago when I moved the clock/radio away from my head and also moved the bed so my head was away from the electrical wiring inside the wall (this stuff gives off EMF's even if nothing is turned on from the outlet it leads to). All that was before my health really deteriorated into full-blown TS/PANDAS/craziness mode. Monarchcat--Did your son have irritability/rage attack issues, and, if so, do you believe fluorescent lights played any role in causing them, or what the triggers might have been? Michael

As I research more about PANDAS, awaiting the CamK number from the study, it's looking more and more to me like I really do have PANDAS. Sensory sensitivity is listed as a PANDAS-associated symptom, and it has been my biggest problem, particularly fluorescent lights and wireless devices and, to some extent perfumes (but the perfumes have been, until recently, easier for me to avoid). My problem with the fluorescent lights and wireless devices is very severe, causing headaches and digestive disorders and nightmares and immune system weakening. A few things I would love to know are: 1. Is the sensory sensitivity caused by PANDAS, or is the PANDAS causing the sensory sensitivity? Has anyone had a child with PANDAS and sensory sensitivities get effectively treated for PANDAS? If so, did the sensory sensitivity improve? 2. Is there anyone else out there with PANDAS with sensitivities for fluorescent lights or wireless devices? If so, how severe and what symptoms? For those who don't really know, have you considered trying to remove your PANDAS child from these potential triggers for a long enough time to tell? Probably could not be done during school, but maybe a long weekend, or vacation or holiday? This is getting a lot harder, these days, the fluorescent lights are in most public buildings, and the wireless devices are getting that way as well, as I was in a hotel and restaurant with my family just yesterday and the signals were very strong. [For wireless devices, the big ones I know of are (1) cellphones, even just when they are turned on and ready to receive calls; (2) wireless access devices that permit wireless computer access at workplaces and coffee shops and even in some homes; and (3) most laptop computers now, even if you are not using them for wireless access, come with a button or switch and, if you don't get a warning when you turn it on that wireless is disabled, it is probably on and sending wireless signals.] Michael

I have a message I would like to send you. Michael

I have a nutrition book that lists vitamins, minerals, aminos acids, that sort of thing, for various foods. Looking at it just that way, the pomegranate is not really remarkable or special at all. But, it could be anti-inflammatory and have high anti-oxidant value, and maybe it is something more like that as far as what you experienced. I heard it was thought of as a special food in some ethnic groups where the fruit has grown historically (not remembering where that is right now). Like to hear more if you try again or anyone else tries it. Michael

I'll give you my thoughts, but will caveat that I am not a parent, and I might also be different because I am an adult, not a child. I know with one counselor/therapist I went to, she was very focused on energy work (EFT, psych-K, etc.) where it was important to be in tune to the person she was treating, and somehow that approach to things lent me in the direction of expressing more true feelings directly, and with that comfort, I went into baby talk more than anywhere else. She used to encourage me to talk normal, as if I was doing something wrong, and it did put me off some, and then after I got diagnosed with TS, I felt I had ammunition to defend myself that she was being unreasonable there and told her so. But, she eventually came to use the phrase "what would it be like for you to...", ending with, "say that differently", "talk in your more standard voice", "not use that word", etc., and I felt much better with that approach. It made me feel like I was being made aware of it and encouraged to change, but allowed to say that was too hard or a bad idea. She also used that same approach with my repeated use of the terms "b*tch", "chick", "a**hole", "dude" in place of woman/man/he/she/etc. I am sure this got annoying for her to hear that word used so many many times in place of regular words, particularly when the people being discussed were people we both knew that neither of us thought of as a whole in this way, and sometimes that person being referred to was her, in third-person-speak. I truly don't know if I should ascribe it to having a lot of anger to express or coprolalia, but I know I would engineer sentences in a way to use those terms a lot. In any event, that same approach of "what would it be like for you" worked much better on me than the talk she tried about having boundaries and she not preferring to hear that term so many times, blah blah blah. So, to me, I think the key is "gentle reminder", as you suggest. Michael

On the "baby talk", here I am 42, and I go into baby talk sometimes too. I tend to do it more when I am feeling comfortable, but it is not on purpose. After I was diagnosed with TS a year ago (from symptoms since childhood), I just put it in the category of vocal tic of speaking in different accents not on purpose (like indian, new england, etc), and just considered it another "accent". After reading on the Dr. K. site today a detailed description of PANDAS, and it lists baby talk, I am looking at that a little differently. As Faith points out with her example, it can be hard to tell, but, from my adult perspective, it feels like a real symptom, and I may notice I've slipped into that after it happens, or not, and I may be more comfortable staying there a while, but it does not start on purpose. Michael

Yes, I have had really a lot of these symptoms since childhood. Just took the time today to read the description from Dr. K's website, and perhaps the PANDAS description fits a bit better than the TS description. But, honestly, the absolute worst problem I have is sensitivity to fluorescent lights and wireless devices and then perfumes. This exacerbates everything--things perhaps thought of as PANDAS symptoms (like irritability and even rage attacks, and nightmares) and things not necessarily thought of as PANDAS or TS symptoms (like headaches, inability to concentrate, fatigue, acid reflux, diarrhea, and a much longer list of items that I am blacking out on at the moment). I see sensory sensitivity as TS triggers and as something that PANDAS kids have, and then there are MCS people (multiple chemical sensitivity) and people with TMJ (which my local TMJ doctor says I have as well). But, I haven't run into any health care provider ever that has seen this type of sensory sensitivity (fluorescent lights and wireless/cellphone/etc) to the degree I have it. So, it's like the TS/PANDAS has done a lot to explain what's going on, I still feel like I don't quite fit as close to typical even here. Is it possible a number of PANDAS kids really are this sensitive to these things, and the parents have just never noticed the correlation, because they are not looking for it and so on? I guess. Anyone here paid attention to this regarding their PANDAS kid? Michael

Isabel, Hopefully it will all lead to some good treatment for him. Do you mind telling me when you had your blood drawn, in terms of date or how long ago? I'm curious because I had mine drawn and spun on Nov 19, Thursday, so they received mine on Nov 20. Just wondering how long it is taking. Michael

Hi all, I have not posted a lot on PANDAS, am currently awaiting Cunningham study results. I am 42 years old, diagnosed with TS about a year ago, but considering PANDAS. Could I really be the first adult to be in the study? In any event, the thing I'm trying to clarify in my mind is, in this study, how are they classifying people into the TS or OCD or PANDAS groups? I mean, the write-up shows the average score for PANDAS and for TS and so on, and the averages and ranges are very different for each group. But, what is the criteria for being in the PANDAS group? True diagnosed strep as a child with tics? Favorable results when treated with antibiotics? I could speculate on. I think the write-up talks more like strep as a child with tics, but, I'm puzzled by the impression of reading a number of posts regarding kids that test negative for strep and their parents still feel they have PANDAS, I believe in many cases "confirmed" by this study. Not trying to cast doubt, just trying to understand. Could anyone explain their understanding? Michael

Regarding the ACV, I want to first point out that my diet lately, fighting candida and food allergies and being a vegan besides, has been EXTREEEEMELY restricted lately. I have started energy testing foods before I eat them. But, for a couple weeks, I could actually eat pickles and mustard and it was exciting for me in terms of variety. Then, things went crazy in terms of environmental triggers and health went seriously downhill with candida increasing, and I couldn't eat the pickles. Then I read that candida diets should avoid pickles and vinegar, and I couldn't believe I hadn't known that, but, just wanted to point out, when I hear about vinegar being a problem, for me, I think of candida being part of the picture. Michael

Yes, want to second or third or whatever, how grateful I am for this board, all the wonderful people here, and of course Cheri who help so much to keep it going! Thoughts and well wishes regarding your husand, Cheri! Michael

I have seen the video of the cheerleader on youtube, so, it is out there to be found. It was a flu shot, she was training to be a Washington Redskin cheerleader, and yes, she was drastically affected. Michael