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Wombat140

Who treats adult PANS and will consult long-distance?

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We're at our wits' end to find anyone who can treat me - we'd had high hopes of Amy Smith in California but have been unable to get any reply to our calls and e-mails so far.

 

Who do all of you know who will treat PANS in adults? And who's willing to do long-distance consultations? Please name as many of each as you can!!

 

My family doctor is willing to take any blood samples that are needed, write prescriptions on the specialist's instructions (so long as they're not for things that she, at her level of seniority, isn't authorised to prescribe - I don't know how likely that is to be a problem) and be responsible for keeping an eye on my general physical state. I know that that's the eminently sensible-sounding arrangement Amy Smith follows for long-distance patients, but no sooner had we established that than she went incommunicado on us.

 

By the way, if we can find such a person, do you happen to know if there are any particular difficulties to be dealt with in being treated by a doctor in another country? We're in the UK and I know there don't yet seem to be many PANS specialists outside the USA.

 

Thank you all very much in advance,

Wombat140

Edited by Wombat140

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Hello Wombat 140, is there any possibility that you could get funding via your GP through the independent funding review panel (CCG) to access a private doc to treat PANS. My GP has agreed to make this application on behalf of my son but I also need to find a Paed who will do it. Is someone currently treating you? Have you also put your request out here:https://www.facebook.com/groups/146560548824378/

Edited by GMT111

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Also I wonder if you call it its re-branded name: Post infectious autoimmune encephalopathy, will remove the paediatric part (assuming your older) as I think PANS/PANDAS tends to limit the group it affects, my apologies if this is unhelpful, i understand your desperation, I would try the private route.

 

I've attached a paper about auto immune encephalopathy, in it, it describes a number of auto immune anti-bodies as well as the offending infections in this condition, it relates to paeds but equally applicable to adults. If you are able to identify with your GP any of the antibodies for the infections you might just be able to get a decent enough neurologist to acknowledge. My son has current infection for mycoplasma pneumoniae has abx but no doctor to provide ongoing treatment.

 

The research was carried out in England

 

http://jnnp.bmj.com/content/84/7/748.full

Edited by GMT111

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No, that's what I said, that's the whole problem - we've been only too keen to go private (having seen the length of time it takes for the NHS to arrange something unusual like that), but whoever pays for it, I hadn't been able to find any doctor in the first place.

 

But it's all right, because I've been able to get into contact with Amy Smith again and we have an appointment for next Wednesday! I can hardly believe that I can get seen so soon and with so little fuss, after all these NHS people talking about it taking weeks just to approve my referral to somewhere!

 

The trick seems to be to leave a message on their phone asking them to e-mail you. I think their e-mail inbox must have got so clogged when Amy went on holiday in July that they still haven't caught up, although they do seem to be answering my e-mails again now, having realised they're there - I think they were getting overlooked in the muddle before.

 

"Post-infectious autoimmune encephalopathy" is one I've not heard before, thanks, I'll try and remember that. And another research paper's always interesting. I'm not sure what good it would do to "get a decent enough neurologist to acknowledge" that I had PANS, since if they weren't someone who dealt in PANS themselves, surely they wouldn't know what to do about it if I did? (May sound odd to be still asking since I've now got an appointment, but after what I've been through in the last several months, I'm always nervous that things might fall through yet again and I'll need to start looking again!)

Edited by Wombat140

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Hello Wombat140, I hope your appointment with Amy went well. We also went out o see her and she has started treatment for my DS 14, I just wanted to let you know that I have been liasing with her coming over to the UK which is likely in Feb/March. We have apporx 27 patients for her to see and thought you might want to see her as well, you at least won't have to go next year. As an aside, can you tell me if you are getting you meds shipped over or is someone in the UK prescribing for you?

 

Many thanks

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One more thought, you might also look or an ilads.org trained llmd. The lyme docs seem familiar with pans/pandas/autoimmune encephalitis--at least more than most...

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Yes, I've heard about the Amy project! I didn't know it was as many as 27 though. Can you tell me, are any of those in the North of England? I was wondering whether, if some of us are, it might be possible to persuade her to pay a visit to this part of the country, rather than stay in London the whole time (which is where I'm told she'll be staying)? We could arrange to pay fares/organise transport for her and so on if it would help. You see, it's not going to be possible for me to get down to London.

 

I'm not getting any medication at all, because things have ground to a halt. Amy says she legally can't prescribe medications or order tests herself, directly, without having met me. So she would have to do it through another doctor here who would prescribe things on her advice. But my GP says she can't order tests unless she can point to somebody registered in this country she's working with who is qualified to interpret them. So we have an impasse.

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Center of Occupational and Environmental Medicine in Charleston, South Carolina. Look them up online, Pandas or OCD isn't listed on the site but that is where I am being treated

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Hi i posted earlier but can anyone help me, thank you. I have lyme and bartonella that caused full blown pans as an adult, anyways does your personality come back with proper antibiotics and derealization go away, i have a good llmd and startwd treatment few months ago, thank you.

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