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eacampbell67

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Everything posted by eacampbell67

  1. You're welcome. . Sure I'll inbox you with my info so we can chat, would be great to compare notes
  2. my daughter's last ritux 8/2 so this week we are 7 weeks post 2nd part of 1st infusion. we seen some small improvements - my daughter has some major cognitive problems ( forgot how to read) & hearing sensitivity. her memory has improved and seems a little more there- we where told by other parents that you have to waiting until week 8 until we start seeing results. we had her blood work done last week to see where her b cell levels are.
  3. so sorry to hear about your son, my 15 daughter has similar symptoms that started in 8th grade - great student, then summer of 8th grade hearing sensitivities, cognitive decline, and regression. We chased anxiety, Lyme, other co-infections, it turned out to be AE (autoimmune encephalitis) so inflammation was causing her symptoms. We believe if was brought on by strep , we had IVIG, steroids - she improved enough to attend half days for two months of 8th grade. We then had her tonsils removed and had 1 round of Rituxan. Her memory has improved but still has not fully recovered, she should be in 10th grade but will have to redo 9th and probably part of 10th. She does therapy twice a week - which helps with her OCD, anxiety. We tried SSRI and it didn't really work well for her. CBD's help her with anxiety. Like you we worry if this will be long term, but what I've heard and believe it just takes time for the brain to heal after the inflammation. Not sure if this is true in your son's case but either way Wish you son a full recovery to good health - hang in there
  4. We work with Dr. L and had my dd 2nd infusion of ritux on Aug 2nd. No major complications during or right after, only a slight headache. She was not very fatigued. We did not keep her home we traveled to the beach the following week for RR. She was fine. We did in the Dr. L's office. We treated all co-infections prior to Rtiux, plus we had done IVIG and her tonsils out prior to Ritux. We're told to wait until 8 weeks after her 2nd infusion to see real improvements. That's held true - we have seen small improvements in memory, and fine motor skills, still can't read and has major hearing sensitivity. This started a year ago, we chased Lyme, and all other infections. My dd is 15 and will have to redo 9th and probably 10th grades. hope feedback helps
  5. 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.
  6. 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
  7. 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
  8. 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
  9. Yes Dr. Jemsek in DC - any experience with them?
  10. has anyone been treated by Dr. J @ his clinic, going to start my DD on treatment. pls inbox me with comments..thanks much
  11. 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...
  12. 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
  13. 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....
  14. 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??
  15. 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
  16. thanks msimon & bobh - for the insight, very good for for thought
  17. 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
  18. 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.
  19. very helpful, we are just starting treatment for dd, thanks for sharing
  20. my 14 yr old currently taking abx to begin recovery from PANS, we are just in week 3. believe she was exposed in March 2017 - we notice axniety, then buy July morphed in light and sound sensitivity, memory issues and finally cognitive regression and migraines.We've had MRI, EGG, etc all negative. Most concerning thing is seems like she has "forgot" how to read?? Anyone had similar experience? Will she remember how to read once she gets better or will she have to re-learn
  21. my daughter is being treated for PANS/PANDAS - combination of zithromax (25mg) & minocyline (100mg) daily, NP Kayleen Clute is working with us. question - has anyone had expeience using TBB plus or OPC?
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