HELP!

[Hitman3161]

Hi guys,

I'm very sorry to keep going on. Yes, there is a positive response to the antibiotics, but my step father is very cynical and demeaning and my mum is rather reluctant to fund treatment in the states, grasping at other less likely and unhelpful explanations. 

Psychological therapy hasn't helped at all through the years, my cognition is in dire straits which has impacted education and occupational opportunity and left me in a state of pure social isolation for the last 8 years!

I'm very uncertain of my future now. I have been marginalised and ostracised by my peers, and coping alone with no support at all - having to pick myself every time - has been a mind bending experience.

This post is just to ask at opportunities to raise funds, or if anyone could provide any pointers. These last 8 years have really been a humiliating experience. :/ 

I don't think I have the strength to go much longer.

Thank you for taking the time to read, I only wish I had a more understanding support network in reality...

[bobh]

I have never used gofundme, but have heard of one parent with a PANS child doing so.  But I think it is too difficult for the PANS patient themselves to orchestrate it!

I am so sorry to hear about the demeaning step father.  Your biological father is nowhere on the scene?

For now, you are doing better on the abx; keep records to document that.  Take a long-term view with Mom and try not to let her current response get you down.  If you think you might be getting depressed about it all, try to get psych help with that if that's possible, Write back here regularly and tell us how you are doing.  

[Hitman3161]

Hi Bob,

Thanks for your kind words of encouragement. Yes, I can gladly confirm a very positive response to clarithromycin - I've been taking it for roughly a week now, and have seen an almost spontaneous improvement. I will continue to update, and see the process through. I am due sinus surgery soon, and then the decision will arise as to whether or not I can finish treatment in Chicago. Obviously, the single biggest diagnostic factor was the response to the anti-inflammatory/immunomodulatory effects of the antibiotic, which is definitely an upshot!

[Wombat140]

That's great news!  Really pleased for you.  It's always such a relief when things do let p at al!  Good luck with the operation, I hope that does good things for you too.

Something I thought I'd mention: My symtpoms make it imposible for me to travel any distance, I could never get to Chicago.  At the moment, our only hope if it comes to IVIg (I'm currently on herbal stuff for Lyme dises, under Amy Smith of California, so we're seeing if that'll work first) it to contact those people at Oxford who did that trial recently about autoimmune causes of hscizophrenia (which used some kind of intravenous treatment, I can't find out whether IVIg or PEX), and ask them how they wangled it and whether they can think of any way I might be able to try it.  WOrth considering.  Yoiu'd probably still have to pay though, bu it might not be as much.  (chunk of links, which is as far as we' ve got ourselves at the moment:  Autoimmune Encephalitis Alliance Belinda Lennox — Department of Psychiatry King's College London - People at the Stress, Psychiatry and Immunology Lab & Perinatal Psychiatry Professor Ed Bullmore :: Cambridge Neuroscience Depression: A revolution in treatment? - BBC News BBC Radio 4 - The Inflamed Mind Autoimmune attack behind some cases of schizophrenia | New Scientist )