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  1. For the adults with PANDAS /PANS....

    Thanks! I didn't know you could do your own swabbing!! Do you know where I could look into that? My doctor only did a throat swab even though I have heard it is better to swab pretty much everywhere. How long after an illness would results potentially still come back positive?
  2. For the adults with PANDAS /PANS....

    Hi bobh, My swab came back negative. I did not ask for blood tests, but if I end up going to a Functional MD (which I am considering), I will ask them to run the bloodwork. Thanks for asking!
  3. How did you get diagnosed?....how did you get your doctor to listen and take you seriously (especially since it is labelled "pediatric")? What made you think you had PANDAS / PANS vs. something else - e.g. did your child have it? When I asked my doctor to swab me for strep and I briefly told her why, she said in all the years she has practiced medicine she has never heard of strep presenting this way. I'll give her credit in that she actually did end up doing the swab but if it comes back negative I am pretty sure she won't run the blood tests.
  4. Thank you....I will look into it...always nice to have additional support. With that said, this forum.is a wealth of information and I'm grateful to have found it.
  5. Thank you bobh! I'll look into Dr. Edwards. It's pretty disheartening that there are so few doctors/resources available. (When I read through various posts and threads and hear others say they have a PANDAS friendly doctor, I wonder how they found them!) Thank you for your feedback on SickKids...that is really great feedback. It really sucks overall, though.....in most cases the first place I prefer to take my kids to is SickKids so to hear that that might actually be a worse option is pretty awful.
  6. Child AND parent displaying similar symptoms?

    I also asked this in another thread I started on Lyme tests....has anyone done muscle testing to see if Lyme and/or coinfection (or PANDAS / PANS) are present? If so, how accurate was the muscle testing...was it worth it to try? Do antibodies have to be present for muscle testing results to be accurate?
  7. Child AND parent displaying similar symptoms?

    Thanks Sirena. Will do. Intereting that it can run through families....I totally thought it had to be each person had to be bit by a tick. It sounds like anaplasmosis is most obvious shortly after a tick bite....my daughter's bullseye rash first appeared last August....not sure it's that but something to consider. My daughter has also been clearing her throat a lot like she is trying to clear phlegm. I know this could just be regular cough/cold related but thought it was also a sign of Lyme?
  8. Lyme tests?

    Has anyone tried muscle testing as a preliminary way of trying to see if you have Lyme or coinfection (or PANDAS /PANS) If so, were the muscle test results accurate? Does it matter what the antibody levels are like in a blood test or would you still test weak if you have it regardless of fhe antibodies?
  9. Lyme tests?

    So I spoke with Igenex yesterday afternoon and they recommended the Lyme Immuno Blot Panel 3 - they said it is replacing the Western Blot test and is 90% accurate. For co-infections they suggested Co-infection Panel #3 and said it is rare for the results to be innacurate. Does anyone have any thoughts and/or experience with these tests and your results? After speaking with them I went back to their website and it looked like a different test altogether should be run first (ELISA?)..does anyone know anything about that? Sirena: Any tips on tests to take through Medical Diagnostics Laboratory and their relative accuracy? In terms of timing and if now is a 'good' time to test....my daughter had the bullseye rash first appear last August; lasted less than a day, and again in....I think....January? Also only appeared a short time. Her cough/could came on about a month ago and mine about 3 weeks ago (odd symptoms asdociated with it came on about 2.5 weeks ago). If she (and we) have mycoplasma pneumoniae (which we seem.to have a lot of the symptoms for) does it make any sense to pursue Lyme testing?
  10. Lyme tests?

    Thanks msimon. I was hoping to go the LLMD route first but the one I spoke to this morning said that they are booked until end of June and that I should try and get bloodwork ahead of time and gave me Igenex's website. (The other referrals are for practitioners out of town or require a confirmed diagnosis of Lyme in order to get an appointment. I don't mind going out of town if necessary but without more 'evidence' I was hoping to try local first, if possible.) To be honest, I don't recall having a tick bite.....my daughter had the bullseye rash (aopeared twice) and she and I are both experiencing some similar symptoms (I posted a separate thread on this). I checked the Lyme Disease symptoms list and can identify with at least a third of them (not sure if that is relatively high or low), so figured it would be good to get tested and try and rule in or out LD or other tick-borne illnesses.
  11. Lyme tests?

    Hi all, I've posted a couple of threads recently related to PANDAS/PANS and Lyme. I called a Lyme Literate doctor this morning and they are booked up for a few months and suggested I get Lyme screening through the US (Igenex) while I wait for an appointment. I checked Igenex's website and there are a variety of tests so not sure where to start. My daughter had a bullseye rash last summer that went away the same day; I saw it reappear briefly a few months ago and it disappeared as quickly - not sure if we should test for "tick-borne illness" vs Lyme specifically (especially if we both have some symptoms)? Does anyone have suggestions for which test(s) to have done? I have reached out to Igenex Customer Service and am waiting to hear back....trying to get some info quickly as I have a doctor's appointment tomorrow and would like to be able to review and request tests with my doctor. (I don't think my GP is Lyme literate.) Thanks!
  12. Child AND parent displaying similar symptoms?

    Thank you so very much for all of the information you provided. I am very grateful for all of your time and efforts. I will look into everything you suggested. I have a doctor's appointment booked for myself tomorrow.....I am really hoping she will run some tests and do more in depth screening.
  13. Hello, I know there have been a few threads related to this but am hoping for any updated information... Can anyone recommend a PANDAS / PANS doctor in Ontario, Canada? Also, if as a first step I go to our GP / ped to discuss PANDAS / PANS, what tests do i ask for? I know a strep throat culture can be done but what about swabbing other body parts, swabbing for staph, etc, and what blood tests do I ask for? What do I do if my GP/ped refuses to do the tests? Also, can test results still come back postitive even of the main sickness seems resolved / how long will a test come back positive, regardless of symptoms being present? Thank you in advance!!
  14. Child AND parent displaying similar symptoms?

    Thank you!!! I have heard of mycoplasma 'stuff' but not in relation to pneumomia. How would I get us tested for that? What OTC inflammatories would I try? Our ped is familiar with PANDAS but hasn't seen a case officially. My son was swabbed for strep but it came back negative and our ped thinks it is unlikely our daughter has PANDAS (prob for that same reason). I like our ped a lot but would feel better if she tested my daughter too. She has referred us to a pediatric neurologist and we are waiting on an appointment date....I believe it won't be for at least a couple of months and I am scared that we have to wait that long and whether that could affect things more. Any tips for finding a PANDAS savvy doctor? Any tips for waiting on the neurologist vs. Something like taking her to emerg and insisting on tests?
  15. Is it possible for both your child and yourself to have Lyme Disease or some sort of PANDAS/PANS? (I know PANDAS/PANS is pediatric in nature, but I have explained more about our symptoms below.) Three weeks ago my 4.5 year old daughter came down with a cough and cold, nothing over the top. A couple days later I saw her display a couple of shoulder shrug tics, and at least one of those times she seemed to be sort of vacant or zoned out. Within a day she was back to her normal self. A week later I saw her do a couple more tics but she was “normal” otherwise. In the last couple of weeks since then, my daughter has not displayed tics (until today), but she has said some odd things, been overly emotional and a bit hyper at times. I have wondered if she possibly has PANDAS or PANS based on moodiness and just that she seems ‘different’ for a day or so following a tic episode. All this time, my focus has been on my daughter and what has brought on the tic..however, in the last week, I too, have come down with some very strange symptoms, which I think may be similar to some that my daughter has had. I have come down with a regular cough/cold too, but it has brought on some other symptoms that I haven’t ever experienced before. I have had a very sore stomach and feel nauseous a lot and appetite is diminished. When I do try and eat, with some foods, I have had very strong anxiety and sort of feel like I am having a panic attack come on which I have *never* had happen – my breathing gets shallow, my head almost dizzy, and my arms have physical tension in them. I also think I have experienced a few random muscle twitches (tics?), mainly when I am tired. It has been a very unsettling feeling to say the least. Normally I wouldn’t have connected our illnesses, but my daughter has mentioned a few times in the last week or two that her stomach is sore and I wonder if our stomach problems and subsequent mental effects are related and/or similar….something just feels a bit off in both of us. As I said, one of her tic episodes she seemed sort of out of it. Has anybody heard of both the child and parent having similar symptoms (including tics, mental effects from a cough/cold) and if so, what was it? I have found a number of things this could be but I’m not sure what to think or what tests to ask for: Lyme Disease? My daughter had a bullseye rash appear last summer; doctor said it was a spider bite. Saw the bulls eye rash briefly a few months back but went away quickly. But could I have it too somehow?? What tests would I even ask for?? Parasites? Would parasites cause a mental or emotional effect? What tests should I ask be run on us? PANDAS/PANS (is there an adult version of this)? Will test results still yield anything if not done for another couple of months (when we are likely to see the neurologist)? Can strep and/or staph infections bring on mental or emotional effects? H. Pylori? (I had it years ago and don’t remember having mental/emotional effects.) Vitamin or mineral deficiency on both of our parts? Mold? Candida? Please help with any advice, thoughts, ideas! Trying to figure out where to start and how to get my doctor to do testing and/or referrals to get to the bottom of this.