I have decided (contrary to my bio) to seek a formal diagnosis. I have been looking back at my childhood and looking at points at which I think things got a lot worse. So up until about age 9 or 10, I was intelligent, hyperlexic and a pretty decent free thinker. I had some traits, not many friends, got bullied and was pretty much the odd one out. But for me, what I had was manageable.
Then aged 9 or 10 I had tonsilitis which at the time seemed to last for about 6 months. Three months back i had a bunch of blood tests prior to undertaking immunosuprression therapy and one of them came back as positive for rheumatic fever, except I'd never had it, that I knew of. So piecing things together, I suspect this 6 month tonsilitis was actually tonsilitis and rheumatic fever. i remember essentially hallucinating/having delerium for most of the time I had it. I developed a phobia of stepping on cracks in pavements and would obsessively do anything to avoid walking on them. Also my behaviour at school went off the rails completely. It was the start of a long downwards spiral lasting about 15 years.
So I have done a little research and it seems to show some evidence suggesting people with a rheumatic fever antibody also have ASD. Just wondering if anyone else had rheumatic fever as a child and noticed their autism getting worse after it.
This is currently my situation too, i will now write an extensive thread to explain what this condition is, how it manifests itself and more importantly how we can stop it.
I am writing it in a different thread because for the past week i have been intending on doing so as this condition is absolutely crippling to us and you all need to be aware of what is.
This was a thread i started a month ago whilst in the grip of a full on infection https://community.autism.org.uk/f/health-and-wellbeing/13206/p-a-n-d-a-s---asd
Since this post i have undertaken extensive research and pieced together a pathology and started to treat the symptoms whilst awaiting for a referral to an immunologist, its going well :)
After reading your thread I noticed that you said antibiotoics never seem to rid you of the infection. What antibiotics have you tried so far? For me macrolides don't tend to work all that well anymore and due to other things I take I am no longer able to use some of them. Add in a penicilin allergy and that generally leaves tetracyclines. Generally I end up on doxycycline for most infections and once in a while, cipro. Last time I had the strep throat I was on antibiotics for a month, but since then (several years back), I have been clear of it.
I hope you get better. i think strep throat is far worse than most infections we get and the delerium end of it is very unpleasant.