MichaelTampa

Not sure how much volume and duplication you want, but the webpediatrics.com site (Dr. Kovacevic) has a couple/few excellent pages of basic information on the topic. Michael

Debbie, I know it's frustrating, but, you have to appreciate the honesty, she was absolutely right with at least one thing, she can't help you, and the best thing she could do for you was tell you that. Michael

I'm still working on who my doctor or team of doctors will be for the PANDAS. My local integrative MD is willing to work with an expert such as Dr. K., and do the PANDAS prescribing and learning about PANDAS, while making sure the plan doesn't ignore any important non-PANDAS issues I may have (and likely giving me chelation). I may go that way, but still exploring a couple other ideas. But, in the meantime, while we wait for test results, knowing I have serious candida issues, this local integrative MD has prescribed some antifungals, I think 3 of them. One of them is nystatin, which is technically an antifungal and antibiotic, but not sure how much an effect it could have on strep (if strep is even in my system now). This might have the advantage of getting the candida down to a point where PANDAS antibiotics could be used without having the candida overwhelm me. But, any disadvantages or problems that anyone sees regarding getting going with the antifungals for now? Michael

I can't swallow pills either, and also try to avoid the artificial colors and flavors. You might try a compounding pharmacy to see if they can mix up a liquid without the artificials. They can do it with some meds, but not all. (Not sure if it can be done for zithro or other antibiotics, I'm not to that point yet.) Michael

powerofprayer, I would definitely be looking for behavioral symptoms as well before considering PANDAS too much. But, the strep diagnosis and immediate onset, I don't know about that. I don't have either of those myself, but I haven't gotten to a PANDAS doctor or treatment yet, so we'll see what the docs say about that. But, I was sick a lot as a child, and in many instances did not go to a doctor. And what about producing antibodies but not getting the real infection because it is a minor exposure that the body kills? I don't look at a strep diagnosis as that important, just my opinion here, of course. Regarding the immediate onset, it would be nice to see it for clarification ... but, would it really be noticed at age 18 months, or just seen as a development issue? I don't have kids, so can only ask the question, not answer it, but, just wondering, would a parent really know and see that as immediate onset? Michael

peagreen, I see your concern. I don't have any information on my own that can help you, but hoping you consider a very experienced PANDAS doctor familiar with immunology, if you don't get the information you need here. One thing you said concerned me, though, regarding my case. I am just about to gear up to get treatment for myself, and I am pretty sure I have serious yeast issues. Do you know why azith would cause a problem for someone with yeast issues? Is it just azith, or most/all antibiotics? Michael

Oh, I see, thank you for the clarification, so, he could have worthwhile experience with adults as well, I'll just have to ask.

Dr. K says he has experience with a couple dozen after-puberty cases, and I was figuring that was going to make him more the expert than Dr. T or Dr. L. I thought Dr. T was just still setting up, so couldn't have that much experience yet. That was my thinking anyway. Dr. K will not be able to make any prescriptions, so I am really needing a local person, and so I haven't bothered to make an appointment with him yet until I figure out the local person. Considering Dr. Bradstreet's group in Melbourne Florida, will call them on Monday to see their willingness/abilities. Also will discuss with my new integrative MD to see if he thinks he can handle or recommend an immunologist. So, that's where that hunt is right now. Regarding othe relatives (nieces/nephews), you can always find a sign here and there if you are really looking, there are so many. But, none of them really stand out as looking like that. One niece literally had strep about 1 week before Thanksgiving when they came down to visit. She had been on antibiotics for about a week, and showed no visible signs at the time. I did come down with a bad cold, but that could also easily be due to compromised immune system from all the wireless in the disney park, it was quite brutal for me. Discussed the PANDAS with my mother about a week ago, no real reaction to speak of, she was just taking it all in, as it was all a very new look at things. She really does not remember me as being a problematic child. I do think the rage attacks were very infrequent, and she was lucky enough to not be there for some of them.

I think Joan is wondering this, and I have been as well, as I am excited to have a new approach to treating my condition, by considering it PANDAS. BUT, what are realistic expectations? Do these always/almost always work? How long does it take? I have heard a lot of positive results, but not too many negative results. Are there many out there? Michael

I think as an adult I was on antibiotics once and NSAID once. It's not a lot of experience, but I do have a memory of taking one of these and thinking how it did make me feel overall better (probably means calmer), even though it was totally for something else. Best guess is that was NSAID's for foot pain considered at the time related to exercising, but never resolved. Interesting, just looking through Sydenham Chorea symptoms more, as my CamK number came in high end of PANDAS, just below low end of SC, and I find "joint discomfort (arthralgia) in the absence of redness, warmth, or pain upon physical examination", and perhaps the best story for my foot pain, which has been looked at so many ways by so many doctors, without any diagnosis or resolution. I also found nose bleeds (lots as a kid, some as an adult, but, also, generally bleed easily), light sensitivity, and could look at all the foot and hand tapping to music playing internally in my head as similar to the "milking" (in the left-right-left-right aspect) and "keyboard playing". Really just minor symptoms compared to whole long list for SC, but interesting to find some potentially in the SC category as well. On a related line of questioning, I would put myself in the category of someone whose psychiatric symptoms (OCD and so on) decrease during illness, such as cold/flu/etc., even without medicine, to the point where attributing it to "having less overall energy" seems unlikely. Michael

On Dr. K's website (webpediatrics.com), he give his experience that as long as you are before puberty, how long the child has had the condition really has not mattered in terms of how well the treatments will work.

Dr. Murphy used to be at University of Florida in Gainesville. But, she is now in the Tampa/St. Petersburg Florida area, at the University of South Florida. So, that's a longer drive from Jacksonville. Perhaps still worth it though. Also, you could consider Dr. Bradstreet & company in Melbourne Florida (icdrc.com), someone else has posted a positive experience there.

I am age 42, just got results from the Cunningham study, CamK was 186 (in PANDAS range), the anti-neuronal antibody titers were all very normal range (are those the titers you were asking about?). We'll see how treatment goes, not that far yet. Not surprised the titers were not elevated--I hadn't had a recent infection at all like strep. I did have plenty of wireless EMF exposure that had been seriously messing with my brain and had a couple weeks before (when the wireless was introduced) led to a real explosion of candida. I believe I've had the PANDAS since childhood. As we get a few more adult cases discussed here, maybe we'll figure something out.

Yes, speaking through the telephone assistants, Dr. Murphy will only see kids, and for a referral, just said to go to the nimh website, yes, the one that says that PANDAS is by definition just for kids. I have always had this situation, back to a childhood that had many sore throat episodes and some cold episodes. But just diagnosed with Tourette's a year ago and just seroiusly considering PANDAS a few weeks to a couple months ago. Was really looking to establish relationship with someone local enough to give treatments if/when necessary, but willing to take Dr. K.'s experience into account as his 2-dozen adult cases may unfortunately be the best there is out there. Hearing of others success with immunologists, was wondering about that, and remembering Dr. Bradstreet in Melbourne, Florida. That's a few hours away from Tampa, maybe not too bad for an occasional visit. Their website does give some discussion of immunology ... for those who have gone to Dr. Bradstreet & co., do you feel they are strong with the immunology knowledge? My CamK results were not specifically compared to adult samples. Generally, they said there aren't adults in the study, so they wouldn't be able to really do that. Now, there was one poster here who was an adult and got tested also, and got a more "normal" score, so, I'm not quite the only adult tested. But, still, it was just treated like the kid samples. That's the thing, you really don't know how adulthood could change the score, but, the score does seem capable of being PANDAS or normal. For me, the CamK, for what it's worth says PANDAS, and the symptoms definitely match PANDAS seriously well, and so it seems time to move on to assuming it's PANDAS until other evidence emerges that suggests otherwise.

It's just a difficult situation, and really, I hope some day people will move away from the mindset that information isn't worthwhile unless it has been double-blind studied. Hopefully she will include a discussion on selection criteria and drop-outs, and be very careful with the analysis and conclusions. I think it's nice she's at least doing something, and would expect it to at least help the body of information.

Yes, it is great to have it confirmed, and a clear direction of where to go, and that was my initial response. Still feel that way, but at the same time a bit shaken, was not expecting that kind of feeling, but it is unsettling. Perhaps any result would have been unsettling too..

cam kinase II score is 186 normal control 92 positive serum control 256 (to ensure test running correctly) Is really the only take-away the 186 number, and compare to chart 3a, looks a lot like PANDAS, not surprised, only question now is what we can do with me. (Assuming the 92 and 256 don't provide any useful information.) Dr. K. is willing to work with me, has worked with a couple dozen post-puberty cases, but needs a local doctor to prescribe and go along. I am going to an integrative MD, second office visit Monday next week, and we'll see if he can/will, but may be a bit over his head, who knows. My other thought is an immunologist, perhaps he can recommend, or perhaps anyone here has a good idea on how to find an immunologist in the Tampa/St. Petersburg/Clearwater Florida area that might make sense for this situation. Michael

I only wish Dr. Murphy would treat adults, as I live in Tampa, but I just spoke with them and the answer is no. :-( Well, I am headed to Dr. K. My reaction to reading about the study was, well, even if it included adults, no way would I do it, way too desperate for treatment to have a chance of treatment. Judging from the response, it does seem like that's typical, the situation is often so pressing and a real treatment (when available and affordable) is going to sound a lot better than a maybe treatment.

I rely heavily on this, as does my acupuncturist. Yes, it sounds crazy at first exposure, but the proof for me is in the results--it's right! I think, for an acupuncturist, the proof is more in just the shear logic of how the body works. I have heard it called "energy testing" (more accurate) or "muscle response testing" (less accurate but more commonly used). I use it to test supplements and also foods. As faith points out, the NAET practitioners will also use it to determine if you have an "allergy" to the food or whatever it is, and then after the treatment, to determine if it is cleared. Over time, I have developed some ability to test things for myself. Imagine being extremely sensitive to supplements and foods, and being able to test for yourself, in the store or at the restaurant or at the dining room table, various items to decide what to purchase or what to eat, rather than just guessing! Michael

Don't know anything about the drugs, new to the PANDAS discussion myself, but, I am 42, no kids, but it is looking a lot like I have PANDAS. Still awaiting the CamK blood results which might give a little more evidence. I had some issues as a child, but none that resulted in any fancy diagnosis. I did just get diagnosed with Tourette's about a year ago, as problems have gotten worse for a variety of reasons. You were diagnosed with "something" as a child? Did the PANDAS go away? How? When? Or you still have it? Michael

Okay, I think I finally figured out what T&A means on this board, I have been confused and making funny faces every time I saw it. Tonsilectomy and adnoidectomy? Are people regularly getting these removed for PANDAS treatment? Or just sometimes? How is this decision made (what factors are considered)? Michael

Fixit, No, I have not gone back to be readjusted. I live in Tampa, and Dr. Sims is in Maryland. I went to Dr. Garcia to get readjusted, but he instead wanted to sell me his different kind of appliances. Really, I saw some results, they were immediate, and they have not gone away. It seems it has done what it is going to do, and I have other issues that need other solutions. I am now looking into the very real possibility that I have PANDAS, waiting for a blood test result and trying to line up a doctor for that. Michael

I take a lot of supplements, but the one that helps for my mood-related symptoms that you describe is SAM-e. I have heard from a few different doctors that Jarrow brand is the best, and it is the brand I take. I take the 200 mg tablet. Like so many things, mood is complicated and no guarantee this will be helpful for you, but since you asked, this is what is helpful for me. Hope you find something that helps. Michael

Interesting information on the Parkinson's and the PANDAS children needing to go (or saying they do) right after coming out. It happens to me very frequently, and worse during exacerbations, that I will leave the restroom/bathroom and 5 or 10 or 20 seconds later the rest is dribbling down my legs. Of course the kids wanting to go right back could have other reasons (so they can wash their hands again, if they have that compulsion), but could it also be they are in a similar situation to me, but perhaps with just a touch more control/awareness than me?

I think this is going to be very useful for so many newcomers, and even those who have been around a little while but have trouble keeping all this technical stuff straight! There is another whole category that could be put there, if it makes sense. Adults. - Can someone get PANDAS as an adult? - What happens when a PANDAS child goes through puberty (will it get better / worse / ...)? - Are treatments for PANDAS less effective after puberty? - I am an adult and wasn't diagnosed with PANDAS as a child. Could I have PANDAS? (Looks like yes) Not sure what else, but I know these were some of the questions I had. I see from Dr. K.'s website he thinks that treatments may not work as well after puberty. Not sure if there is enough experience here to address these questions too much, but thought I'd ask/suggest. Michael