Anyone in North Carolina who would be interested in talking

[puzzledguy]

Hello,

 

I will be starting at Duke this fall as a graduate student. I'm in a bit of a crisis since it will be a long move (all the way from northern California) and I will be away from parents for the first time in a long time. I have chronic health problems, and I'm beginning to suspect I might have PANDAS. I know I had Lyme in the past, but I finished treatment for that.

I am desperately looking for some sort of support from people in the Triangle area who I can meet with who understand chronic illnesses and can possibly help me get tested and treated, or at the very least just be supportive. My parents are very helpful with everything else, like getting moved in, finding therapists, etc., but unfortunately they are of zero help with anything to do with physical health problems. My mom put in countless hours during my Lyme treatment, but now she's 100% burned out on anything health-related and thinks that I'm imposing poor health on myself, that if I just relax more or do the right (psychological) therapy/medication it will all go away.

 

I was THIS close to jut giving up on Duke entirely, and am still VERY tentative about the whole thing. However, since I am academically very talented, I don't want to give up the possibility to make something of my potential. I've already failed two programs due indirectly to my health problems, and I'm 31 now.

 

I was hoping that there is someone on here whom I can talk to, either by email or phone, before I leave, so that I know when I get there I'm not alone. All the other people I've talked to in North Carolina, from office people at apartment complexes to staff at the university to mental health professionals, were super-friendly and helpful, like one therapist even offered to pick me up at the airport when I fly in (I couldn't believe that!). So I'm hoping there is a supportive environment somewhere around Durham/Raleigh for chronic health issues (including PANDAS) too.

[MomWithOCDSon]

Sorry I'm not in that area of the country and I do hope you get some responses from local folks who can lend some support as you're seeking.

 

I did want to tell you, however, that I know of several families who've taken their PANDAS/PANs kids to Duke for testing and some treatment protocols, so the medical school/facilities associated with the University are, at least to some degree, PANDAS-savvy and, I'm led to believe, helpful, as well. So hopefully that will give you a little comfort that perhaps, right there in the Duke community, you can find some supports and help.

 

You might use the Search function here on the forum and literally search "Duke" and see what pops up.

 

I'll have my fingers crossed for you!

[puzzledguy]

Thanks very much MomWithOCDSon. It would be GREAT if the Duke medical center were able to address this--I'll be living within at most a 5-minute drive of the on-campus hospital, if I'm not within walking distance of it.

 

Who there is helpful with getting assessed for these kind of health issues?

[ibcdbwc]

Congratulations for attending Duke! That is an amazing accomplishment!

 

Duke has an established Autoimmune Brain Disease clinic headed by Dr. Gallentine!

 

http://www.dukechildrens.org/services/autoimmune_brain_disease

 

We have not seen them personally but there are folks in the area that have benefited greatly. As I understand it, they don't call it "PANS" nor do they treat lyme but they are most definitely friendly with the underlying theory that autoimmune reactions cause mental dysfunction.

 

There is also a Durham foundation set up by AE families that seeks to educate and support. I would contact them. One such family, very involved, has a pediatric psychiatrist mom, researcher dad and an affected 20 year old son (battling this for years).

 

https://aealliance.org/living-with-ae/

 

There is a facebook group called "Carolina PANDAS Parents Support Group," that might be helpful. Some of whom have been treated at Duke.

 

And now welcome to the East Coast as well! You will be not far from Georgetown where they seem to be doing great research. There is a conference coming up in October that will be full of practitioners from NIMH as well as parents and families. This could be a great networking opportunity.

 

http://www.medstarhealth.org/education/continuing-medical-education/medstar-washington-hospital-center/upcoming-cme-meetings/pandaspans-2016-an-update-on-current-management-and-new-treatment-strategies/#q={}

 

PM if you need more information!

[ibcdbwc]

It occurred to me that you may also want to connect with practitioners in Chapel Hill as I'm thinking of one team - a wife psychologist and husband functional medicine doctor who specializes in finding root causes of chronic illness. Again, I have not seem them personally but have heard a few folks have found help looking beyond surface level PANDAS and into more root causes - methylation, gut health, micronutrient... I can only make the referral based on the reference given to me my one other person. But their website did look promising. PM me if you'd like that information as well.