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Thank You!!!......... and HELLLLP!!! ;)


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The past few weeks have been a very wild ride,  and thanks to this forum and the tenacity of you mums out there fighting for your kids i have found the answer to a problem that has been plaguing me for a very long time  (i say mums because everyother name on here seems to be 'momsomething" "someonesmom" etc) Thank You, Thank You, THANK YOU XXXXXX

Before we get down to the nitty gritty i would like to dedicate this song to you as a token from those amongst us who either don't thank you enough or can't. Take 5 mins, have a cup of tea and please tune in to this small offering.

https://www.youtube.com/watch?v=ZhfWiU8wGCc

A little background first, i'm early 40s, male from the UK with ASD (Aspie), ADHD and also now very, very strongly suspect PANDAS.

For as long as i can remember i've had sore throats, tonsilitis etc but for the past 12 months its been almost constant, ive had 5 days, 7 days, 10 days and now 21 days of Augmentin to kill off the strep (swabbed and confirmed). The Psychological and Neurological swings have been for me the decisive factor in coming to the conclusion that this is PANDAS, the sawtooth pattern of infection and the Psych impacts correlate beyond a doubt, i go from sheldon (Big bang theory) to Lloyd Christmas (Dumb and Dumber) as the uptake of TH17 peaks thats when i know i need antibiotics, i am unable to cognitively operate, maths goes out of the window (a normal strong point) i become irritable, irrational, scared, it exagerates my negative aspie traits, during these spells i am unable to 'mask'. I am currently 2 days post the 21 day antibiotic course so i am on the leeside of the infection, operating at about 40-50% (infection and reinfection is linear, so each time i get reinfected it gets worse) and need to write this before it returns :_(.

My GP has been great in listening and acting appropriately when i raised PANDAS and has begun the process of referring me to an immunologist which is the main reason of this post, i would like to ask for your help to make sure i am able to communicate adequately to the immunologist what is going on, as i am in the UK this is going to be very difficult to get across, i need the best science i can to explain.

I also need to fill in part of the blanks in what is happening with adult occurences, this element is specific to ASD. Our BBB (Blood/Brain Barrier) is already compromised (permissive BBB),  which creates the perfect environs for this process to occur.

So now i would like to attempt to explain my understanding of the process and hopefully if i'm off track a little you can nudge me right :)

Strep infection occurs, colonises tonsils and TH17 starts to be produced, strep spreads to nasal cavitiy, more TH17 produced, TH17 reaches critical mass and travels from the olfactory bulb, down the olfactory sensory neuron axons, crossing the BBB. TH17 then stimulates interleukin 17 to be produced which binds to the proteins in the brain causing the synapses to 'misfire'(?) Interleukin 17 also further opens the BBB to more TH17, antibodies kick in creating inflammation in the basal amygdala, this inflammation then hinders various systems within the brain manifesting the psych and physical reactions?

is that somewhere near right?

Next, what tests to i need to be asking the immunologist to run? So far i've gleaned

DNase antibodies in serum (ADB); antistreptolysin O titer (ASO).

Cunningham Panel 

Anti-Dopamine Receptor D1 Anti-Dopamine Receptor D2L Anti-Lysoganglioside GM1 Anti-Tubulin CaMKII 

Next, Relief? trying ibuprofen but i have to be really careful (leaky gut, just to complicate it, its controlled using probiotics, does it very well however too much ibuprofen will cause havoc)

Only way i can explain the feeling is like a hangover without the headache and it varies with the infection between a mild 4 pint light, foggy hangover to a raging bender drinking bottles of vodka, whiskey, absynth taking LSD then waking up (no headache lol however i do now as the effects subside, as i become compus mentus a light headache takes over) and to clarify i dont drink, havent for 20 years or so.

Also, combatting reinfection. Until i see the immunologist i know i'm going to be reinfected probably fairly soon are there any products i should gargle/rinse with or other openly available treatment? Salt? 

Thanks in advance for any replies and thank you for getting this information out there, you have definately got me on the right path x 

 

 

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Hi there! 

I haven't commented in this forum in years? But I read your post and wanted to comment.

I'm so glad you have found a supportive GP - that is quite rare as you probably already know. As far as your explanation for the inflammatory procress, I *think* it's correct. It's been a while since I read the science behind the inflammation but what you wrote rings all the bells.

A couple of things I wanted to recommend. I feel strongly about the use of some sort of nasal spray to combat the infections that trigger the TH-17 responses in the nasal passages (and ultimately lead to inflammation via BBB). The product we have used, with great results, is XLEAR. I pick it up at the local health store. It acts as a "natural antibiotic" for the nasal passages. It contains, Xylitol, saline and Grapefruit Seed Extract. We have found it invaluable in our home for both preventative measures and treatment.

Also, have you considered getting your tonsils and adenoids removed? 

Good luck! And hope you continue to find answers :)

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