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Found 8 results

  1. Hello all you amazing, fighting Moms and Dads, Was looking for a holistic doc in the NY/CT area who treats Lyme/Pans and made an appointment with him. The other 2 integrative docs were much more expensive so I'm a bit worried that he isn't as good. Hopefully it's just capitalism trying to trick me :-) If anyone has or knows of this doc any info would be greatly appreciated. The other two crazy expensive docs that I'll take her to if need be are Kenneth Bock in Red Hook, NY and Elena Frid in NYC. TIA and best wishes to all!
  2. Hi everyone, I'm looking for a PANDAS doctor in Southern California who will treat adult patients and is willing to prescribe PEX, CellCept, Immuran, Rituximab, Prednisone, in addition to IVIG and antibiotics. I'm new here. 31 year old man who fell ill with an upper respiratory infection December 2016. I recovered from the acute phase, but a set of debilitating symptoms followed: Anxiety / depression / irritability Physical fatigue and low stamina Physical weakness and malaise Increased heart rate on standing and walking Chest pain Breathlessness
  3. I apologize in advance because I know there are several similar posts. I know this because I’ve been reading the forums for a while now but I am desperately seeking guidance at this point. Prior to Labor Day of this year, our four year-old son was an extremely verbal, high-functioning 4-year-old boy with normal physical, psychological, and academic development. Then, seemingly out of nowhere, he started having terrible nightmares that eventually evolved into daytime hallucinations. He also experienced a significant regression in speech. We noticed a severe deterioration in his sleep patt
  4. We can't travel easily. Can anyone tell me which PANS doctors will Skype? Thanks
  5. Hello all, I just joined the group. My 7 year old son is being tested for the strep strain today by his pediatrician, but I need to find a doctor who will take a PANDAS patient. He local doctor knows nothing about this illness. I have called 2 already and they are not accepting new patients. Any recommendations? Thanks!
  6. So over the past couple of months we worked really hard and ivig was approved for the diagnosis of autoimmune encephalitis. I had to go back up to NYU for a week inpatient, and it was the hardest thing I've EVER DONE because of how sick I am, how bad my bladder is, and how bad the ocd is. I came home expecting to get back to ivig but there is a HUGE HICCUP. I am only approved for ivig at one of the local hospitals (the main one where my mom works) but we cannot find a doctor to manage and oversee treatment and any potential side effects, even though I tolerated ivig better than any medication
  7. Have any of you been fortunate to find a Specialist that will communicate with you by email or a nurse line. The specialist I took my son to last December will do 30 minutes phone conferences for $175. I tried to ask a simple questions about a reaction to a medication and the staff said that I would need to set up a conference call. Is this how most specialist in the area of PANS/PANDAS and Lyme treat patients. I have insurance and they will not pay on conference calls like this. I have a cardiologist that works with us weekly by email and calls my house at least once a month. This doctor
  8. Any neurologists or knowledgeable doctors in the south, who will have an understanding of not only pandas / pans BUT neuroinflammation + autoimmunity in correlation with neuropsychiatric symptoms?? I'm looking for someone who will prescribe and understands ivig and pex (already done abx and antiviral). Any of the major cities like Atlanta would be great. I am searching the web and coming up empty handed besides Dr. N and a Dr. Brian Fallon in NY who's main focus is lyme. I've found some researchers, but can't seem to find treating physicians. Would prefer not to travel a far
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