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  1. Hi edsonr, Thanks for checking in...my son had pronounced blinking fot a few days and then it reduced greatly. I sometimes see the odd pronounced blink but nothing too over the top. Around the time his blinking was flaring up, I thought back to fooda he had been eating and/or any changes going on. There haven't been any major changes (aside from the neurologist's appointment) but I did discover that a common brand of boxed soup he had eaten has corn syrup solids in it (had no idea previously that was an ingredient). I know high fructose corn syrup is a big no no for leaky gut...
  2. Hi everyone, I posted on here back in January when my son (2 years old at the time) first began displaying tics - started with pronounced eye blinking, then shortly after included head tilting and face rubbing. He experienced the tics in a pronounced way for about a month and a half. (In that time we had a neurologist referral put in by our pediatrician and only got to see the neurologist last week!) For a few months my son, who is now 2.5, was tic free. However, in the last week or so we have noticed the odd tic here and there - the odd blink, a random head tilt but nothing major
  3. Hi Caryn, I know this thread is quite old and I'm not sure if you still visit this site or get notifications but wanted to reach out as i just saw this post and how probiotics helped your son. What really struck me was your description of your son.... everything from multiple rounds of antibiotics to "buddha belly" to creamy coloured poop - it sounds so similar to my son. How is your son doing now? Are you still giving probiotics and how are his tics? I was also hoping for some advice from someone (either yourself.or anyone else reading this!) who has "been there". I tried to view the
  4. 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?
  5. 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!
  6. 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.
  7. 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?
  8. 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?
  9. 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?
  10. 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 Labor
  11. 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
  12. 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 h
  13. 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.
  14. 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 a
  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
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