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lw47

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  1. Hi, my daughter has also struggled with PANS/ PANDAS and her mycoplasma titers have been elevated this year as well. She never tested positive for Lyme until she had a recent test through our LLMD, who has treated her in the past even though she just had indeterminate test results. She has also been treated effectively a few years ago with IVIG from a PANDAS specialist. It helped, but symptoms came back, and she was showing more fatigue and aching muscles the past year. My hunch was this is Lyme. So she saw the Lyme doctor again recently and she recommended this time that she get a urine Lyme
  2. Can you tell me the name of the immunologist please? I have a friend that has a daughter that may need plasmapheresis. Thanks!
  3. http://www.iflscience.com/brain/brain-receptor-responsible-ocd-identified/
  4. Dr. K in Chicago would be the best person close to your location.
  5. I am right there with you. This feels like it is never going to end. My daughter is 11. She's had problems since age 4. Her second IVIG was last year, and we had 3 good months where the compulsions went away, though still some obsessive thoughts, but much better. Then it all came back. She does well in school, and doesn't have any tics or tantrums, but OCD is present despite treatment. I am holding out hope that puberty/ age will help lessen this, and eventually it will all be gone. I wonder if your child has Bartonella, and that's why things worsened when the Bactrim was stopped? Mine use
  6. I think you may want to consider proceeding with more Lyme treatment. My daughter has PANDAS, and she had IVIG a few years ago that didn't help. She had testing results similar to your child, so we had her treated for 2 years with a LLMD. She did better, but then PANS still persisted so she had IVIG again last fall. Her compulsions went away for 3 months, then came back. So I think the IVIG worked for a bit becuase Lyme and Bartonella were treated. At this point it is the autoimmune part, not Lyme or a recent strep infection, causing her remaining symptoms. If we hadn't treated her for Lym
  7. This is a very bad study. 12 weeks of antibiotics does not constitute long term treatment for someone with Lyme disease for years. I had Lyme disease undiagnosed for 9 years, and was treated by a LLMD for 4 years with excellent improvement. I am off antibiotics now and doing well. 12 weeks of antibiotics is nothing for someone with chronic Lyme. Infectious disease doctors are some of the worst for posting studies nay saying treatment of chronic Lyme. There is hope. I am proof of it.
  8. My daughter had IVIG TWICE- the first time insurance didn't pay, but the second time her IgG levels were low, so she had CVID- immunodeficiency- so insurance approved treatment. She was good for 3 months, then it all came back.
  9. Maybe- I would to to pediatrician first and get strep test, plus ASO Titers. If positive find a pandas specialist. If negative, would still consider a consult with pandas specialist, as sounds suspicious.
  10. I'm in TN and there are no LLMD's here. My daughter and I both had Lyme. There is Dr. Lentz in Indy, and Dr. Crist in MO. They are the closest. Dr. Jemsek is in D.C. They are all good Lyme docs.
  11. At this point, you most likely need to see a PANDAS expert for potentially long term antibiotics and IVIG. Dr. L in D.C. or Dr.K in Chicago. Just google those and PANDAS and it will pop up. They both do IVIG. The more episodes, the harder to treat with just antibiotics. Same thing happened with my daughter, who is now 10. She just had second IVIG. Good luck.
  12. I am not in your area, but Marty Ross is good.
  13. I am convinced your daughter has PANDAS. She has some of the same symptoms as mine - especially the thoughts and washing, and anxiety. She needs to be on antibiotics to prevent strep, and you need to get her in to see a PANDAS specialist. My daughter used to respond to antibiotics, but stopped and needed IVIG recently. Go see Dr. K in Chicago, or Dr.L in DC. Dr. K does phone consults first if you're out of town. Do not waste your time with naysayers. She needs a specialist. Good luck! It can get better with treatment.
  14. I think you should go see Dr. L in D.C. - she is a PANDAS dr and pediatric neurologist
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