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  1. Sydenham's chorea along with PANDAS

    We had some bloodwork done in Feb. After IVIG stratgey was to focus on Lyme - she know believes SC is dominate infection so we are now on the road to fix that. You're right she needs to be and going to start some this week. Thanks I'll contact you.
  2. wondered if anyone has a kid with Sydenham's chorea (SC) diagnosis?? my dd got her SC diagnosis confirmed by Dr. L last week. So its PANDAS along with subset of SC. We initially focused on the the Lyme before we got the PANDAS diagnosis. Not much effect on her symptoms ( cognitive decline and hearing sensitivity). We did the IVIG and saw real improvement - that was 3 months ago. not much since. We have no abx to deal with strep which is the next step wanted to see if any folks have dealt with SC and what was most useful treatment for them? I'm not sure if we have killed the lyme but we where on zithro for 6 months. Dr L does not think its Lyme said its the strep thanks
  3. Trileptal & Lamictal for Lyme

    really good to hear it worked for you gus- we where concerned about some of the side effects since its also used to treat bi-polar and seizures. In my dd case its the inflammation causing the neuro symptoms and the hearing sensitivity, and joint pain in hands. we hope is does clam that down for her also. we are working with the Jemsek clinic in DC and this is 1st phase of there process ( better her system solid with vits, & calm the nuero-irratablity) before the next phase aggressively attacking the lyme & co-infections w/abx. We are keeping our fingers crossed
  4. our DD has been prescribed as part of her protocol either Trileptal or Lamictal - does anyone have experience good or bad? she has been diagnosed with Lyme . Our concerns are the side effects of those two. They are supposed to help with her nuero-irratabliity, nerve pain and extreme sound sensitivity because of the infection. We are considering using something like Lyrica - appreciate any feedback
  5. Jemsek Clinic?

    Yes Dr. Jemsek in DC - any experience with them?
  6. Jemsek Clinic?

    has anyone been treated by Dr. J @ his clinic, going to start my DD on treatment. pls inbox me with comments..thanks much
  7. Question - my ds 14 is currently in treatment for PANS/PANDAS - we are in month 2 of recovery and making progress - we are visiting family for Christmas and one of her cousins is currently being treated for a strep throat infection. We are all supposed to be staying in the same house, what precautions should we be taking?? ( even thinking about staying in a separate house). My ds is currently taking 250mg Zithro and 200 mg Minocycline daily along with 1200 mmg NAC, 2000mg D. We want to avoid having a flare...
  8. PANDAS - Hearing Sensitivity Treatments

    zithro and mino are helping with the other PANS symptoms so not sure if we want to stop yet - we are trying the stoping vit d for a few days and see what happens, we'll also then play with the NAC. We've been told that her hearing sensitivy is related to inflamation still in her system, its been two months & we know recovery will take some time just looking for ways to give her some quicker relief
  9. Recovery Time

    Question - how long does it take to recover from PANS/PANDAS? I know every case is different, but just try to gauge where my dd is in her recovery . She just started 2nd month of treatment(abx &herbs) -headaches & light sensitivity have gone but still has hearing sensitivity & cognitive issues. We believe it was 7 months from her exposure to the time we started treatment....
  10. dd - officially diagnosed with PANS ( combo of lyme exposure, & strep) current daily regime - zithrox 250mg, minocyline 100mg, 1000mg D3, magnesium , NAC (1200mg) , probiotic, herbals - she has extreme sound sensitivity - looking for some good treatments (homeopathic & others) to give her some relief, any suggestions??
  11. TBB plus & OPC for PANS/PANDAS - w/ Clute

    sorry to hear your son is dealing with this - it can be consuming all the whole family. we believe my daughter's started this spring ( exposed to lyme & strep) . starting showing signs - anxiety, by summer time - it was cognitive decline (forgot how to read) & light sensitivity then headaches and sound sensitivity. Our Nurse does believe in PANS, she specializes in lyme so this is right in her lane. we are in week 5 of antibiotics, she's gotten better more herself - less headaches. still sensitive to sound...still can't read. she's going to school but not doing much. we think its going to take 3 months for her to fully recover at best. the TBB & OPC are herbal bacterials & anti-inflammatory What is LDI ?- never hear of it what does it do. Also never heard of SPM? I'll look into it - i think we'll need to prevent flare ups down the road. I know your son will continue to improve - and stays happy and healthy
  12. Most Effectives Treatments for PANS/PANDAS

    thanks msimon & bobh - for the insight, very good for for thought
  13. my 14 yr old dd - officially diagnosed with PANS ( combo of lyme exposure, & strep) we are in week 3 of treatment (we along with our provider suspected is was PANS)- daily regime - zithrox 250mg, minocyline 100mg, 1000mg D3, probiotic, herbals - TBB plus & OPC Our provider doesn't believe in steroids, so we are this course for now. We are new to the PANS/PANDAS ( 3 months to get to this diagnosis) - we've heard about other treatment options - just wanted to get others opinions thanks
  14. PANS - Cognitive Regression & Reading

    MomwithOCDSon - thanks so much for the reply - my wife and I where worried that he ability to read was totally lost for good. We have started reading to her and as she recovers we will try what seemed to have worked for you. She's currently can't read but wants to - we just started treatment ( abx of zithromax 250mg & minocycline 100 mg) along with TBB plus (herbal viral infection fighter) , and OPC (anti-inflamtory) we've seen some real changes over the last 3 weeks - but as you know we are anxious to get her better, the NP we are working with told us it would be 6 weeks min to see some noticeable results, so we thinking it will take a least 3 months.
  15. very helpful, we are just starting treatment for dd, thanks for sharing