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Everything posted by blue_tone

  1. msmom, Thank you for sharing your story about your adult children. Their stories are quite familiar to me. PANDAS/PANS has to be one of the etiological factors for CFS and some of the other comorbidities that tend to go with PANDAS/PANS. And I have to note that having such a varied presentation makes it very difficult to explain all of this to physicians. And yes the physical and neurological issues can be really debilitating and seem to overtake the neuropsychiatric issues. Sending you and your family warm, positive energy....
  2. I am new to this forum, so hello to everyone. I am a woman in my early forties with PANS/PANDAS and CFS. I am wondering if anyone has both or suspects that they have both. It is my understanding that PANS/PANDAS can frequently turn into CFS in adulthood. I am wondering what your experiences are with all of this. I probably had a somewhat debilitating case of PANS/PANDAS during childhood but just never knew it. The signs were there. In my thirties the PANS became very severe. Over the past decade or so the PANS started turning into CFS. I still have the PANS but the passage of time and treatments (antimicrobials, anti-inflammatories, energy treatments) seem to be taking the edge off of the worst parts of the illness. However, now I am often bedridden/housebound because of the CFS and the herxheimer reaction to the PANS treatments. My main treating physician and I are trying to figure all of this out. I have also seen specialists for CFS and autonomic dysfunction. It's been a rough journey but I keep going and my doctor does too, so I am hopeful/optimistic. It would be great to hear from others about their experiences...... thank you.
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