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Adults with PANS/PANDAS and CFS?


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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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Yes, both of my children, now in their mid to late 20's had PANDAS/PANS, and both have CFS. (They have had the PANDAS since childhood, but  it wasn't diagnosed for years and it wasn't  a severe problem until they neared purberty.)  My son still has severe PANDAS/PANS, but my daughter doesn't have any OCD at all now, although she has many physical issues, including CFS. (She also has Sjogren's Syndrome.)  They have both been very physically and neurologically debilitated.  All of these immune issues seem to be related. 

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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....

 

 

 

 

 

 

 

 

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  • 6 months later...

Diagnosed at 7, 25 now and CFS has bee part of my life for what seems like forever. There’s pictures of me from my childhood and there is such a distinct change in me right after I went through treatments. From them on I was pale, bags under my eyes like crazy, and insomnia issues. As of now that’s all still true, I’m chronically anemic and I keep testing with high inflammation (although it could be my meds). I’ve also recently started having some autonomic dysfunction issues. If you don’t mind me asking what are yours? And what anti inflammatory / energy supplements or treatments have you tried? I’m getting desperate as I’m always exhausted and focus is an issue. ADHD meds are the only

thing that help but I don’t want to be on them

forever if possible. 

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