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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 distance. Also, long term immune suppressants would be hugely detrimental to chronic fatigue syndrome. The most effective drug has been ampligen (not available for patients now) b/c it regulates the immune system and had strong anti-viral and anti infectious properties. I hear ivig works similarly and is much cheaper.

 

Southern U.S.

 

Thx.

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Dr Tanya Murphy in Florida was one of the original PANDAS physicians. She is at the University of South Florida in Tampa area last I heard. I have not had contact with her for over 10 yrs so not sure what her treatment protocol is now. She used to be pediatric psychiatry & neurology, specializing in PANDAS

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You should look for dr Dan rossignol. He specializes in autism and in adults with difficult medical conditions. He is a biomed doctor and also is familiar with panda and methylation.

 

He used to be in Florida. He has moved to California but I think he still sees patients in florid upon occasion. He has or had colleagues in Florida who share his philosophy, so if you find his practice info in Florida his colleague who are still there may be a possibility.

 

I think the clinic is on Melbourne Florida but am not sure.

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Dr. Murphy is in St. Petersburg, she used to be fairly conservative with treatment, abx only unless there is an immune deficiency. But more recently she has been more open about recommending IVIG. She's one of the primary researchers on the subject - so she's very knowledgeable.

 

Just noticed that you say you found lots of researchers - Dr. Murphy, while primarily a researcher, does see and treat patients through her clinic at the Rothman Center

Edited by airial95
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Just wanted to say that Duke University has a lot of physicians (that I've found googling) that treat "neurological autoimmune diseases".

 

I'm not sure how to find a physician, or what to do next, but they seem to be at the forefront of research in this area and have excelled with diseases like MS. There is also a pediatric clinic in this area:

(919) 668-4000. Dr. Gallentine was recommended for pediatrics on the internet but I have not found someone for adults yet. Just wanted to pass this information along.

 

I have left several messages and sent emails asking about my situation. I am impressed so far with their research.............. I will let y'all know if and when I get a response. Seem like I'll need to be referred, but how will my doctor know who to refer me to? Or is it just generally the neurological department?

 

P.S. I love NC.

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So at Duke they treat auto-immune encephalitis.

 

I got the following response from one of the adult neurologists:

 

"Duke has a good pediatric program for autoimmune brain disorders but the adult side has no similar multidisciplinary clinic.

We are still building our lists of doctors, so can't recommend anyone specifically right now. I hope these ideas help and you are able to find some answers.

Will"
Just for anyone interested.
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Unfortunately I can't find anyone in the south. I don't want to see just a pandas specialist as they have tunnel focus and I don't even know if that is part of what is going on. I need someone who loves solving VERY complex medical cases where all else has failed. Where shands and mayo have failed 8 separate times on my labored visits. I need a brilliant "solver"/diagnostician.

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I would see if dr rossignol can see you. He says that's exactly what he does and he always get back to you. Short answers were free but longer phone consults I needed to pay for. But he always answered my emails for free when they were short and to the point.

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  • 9 months later...

Ophelia, I can't really chime in and help here, but I think its a good idea that you have finding a doctor that's closer to you. It'll make your treatment schedule a lot less stressful

Lauren was right. My doctors are too far away and there's mostly breaks in communication. They are too busy up north. Is there anyone else researching neuroinflammation and autoimmunity as a cause of psychiatric illness in the south?

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