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Everything posted by Gpookie

  1. You described my youngest to a T. His bad days were just like you described: hyper, disengaged and mdly autistic like. This is why he is on year 5 of longterm abx and doing fantastic. Also needs LD IVIG and antivirals for immune deficiecy. No ADHD meds needed. This works for him. Never needed accomodations, never missed school, pretty much straight As, great and thlete. He is 11 now...
  2. My kids were mild cases. We are on year 5 of abx. Just went to prophylactic dose (from treatment dose of 2 abx) last June. Kids are doing great and have never missed a day of school for this. Will be on abx until they are 21. They are 12 and 11.
  3. I wish I had words of encouragement. What you described is exactly my husband. For 20 years since I met him, he exhibited odd behavior, zero executive function, cognitive deficits and arrogance and ODD through the roof. After I nearly had a nervous breakdown five years ago, he had some psych testing: extreme ADHD and NPD. However, with his 4 PANDAS kids ( 2 from a previous marriage), I had him tested for Lyme. Lit up like a xmas tree. Also PANDAS. His whole life is one drama to the next, yet he sees it all as something being done to HIM, while anyone he comes into contact with suffers. He is being treated for everything, but unfortunately with treatment for Lyme, Pandas, etc., those symtpoms have gotten better, and he regularly goes to therapy, but the NPD (arrogance, self focus, lack of empathy, etc.) Is increasing in leaps and bounds.
  4. Klaire Factor 6 VSL#3 and Vitamin Shoppe has just releases it's own brand ProBio 200. These are the ones we rotate. Kids on year 4 of 2 antibiotics...no gut issues.
  5. We went to our hospital...they didn't even charge us. AAMC out here in Annapolis.
  6. Flu shot is fine. Flu mist (live vaccine), no way in h*ll. Also, no H1N1. H We have followed Dr. Latimer's advice for several years.
  7. Original diagnosis was "hypogammaglobulinemia, possible CVID". Lyme supresses the immune system.
  8. Yes. And then we tested for Lyme. Bingo. That is what was suppredsing the immune system.
  9. It's useful as a diagnostic tool. It is usually used to track improvements during treatment. We arlready are CDC and Igenenix positive. Positive via mainstream testing and alternative testing. Totally symptom free though.
  10. Not sure with ASD in the mix. Our kids had immediate departure of all residual PANDAS symptoms within 36 hours of adding Biaxin to Augmentin three years ago. Now, when the get strep, they don't flare, they get regular symptoms and we add Rifampin for 10 days. They have been on the combo for a year and six months.... Could be yeast?
  11. Is anyone familiar with the Stricker Panel? Used to monitor chronic Lyme. (Quest Diagnostis).
  12. We had .5g/kg every 21 days. After 14 it was okay to do blood draws.
  13. What were your MRI findings? What did your doc say about them?
  14. Check his IgG subclasses and his pneumoccocal serotypes. Perianal strep caused the worst flare my boys ever had...
  15. We are also at 200 bln per day. No gut issues for 4 years.
  16. Test the immune system early one. Treat aggresdively and don't forget to detox as lack of detoxing can make it look like treatment isn't working....
  17. My son was diagnosed with both by Dr. L. He is on year 4 of 2 abx and doing great.
  18. You are clealry not in the Netherlands. Not all of Europe is the same. What country are you in? Each Healthcare system is different. We live part of the year in NL as we are from there. In the majority of Europeans countries you do need a prescription... Tell us more about yourself and your expertise....
  19. Hypogammaglobulinemia/possible CVID. Before that, classic PANDAS/PANS
  20. Similar to my sons. They did great on LD IVIG and double antibiotics. No more flares for 2 years, even with illness.
  21. My kids have hypogammaglobulinemia.Long-term abx and LD IVIG.
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