For as long as i can recall i have been susceptible to throat infections such as tonsilitis and recurring sinus problems; These have been one of those fixtures of life that we learn to deal with but over the past 18 months maybe more it has been a constant cycle of infection>antibiotics>re-infection with a pattern of diminished mental capacity cumulating with each reinfection, this diminished capacity manifests itself as a marked exageration of my ASD (unable to mask, repetitive behaviours increase, anxiety through the roof, clumsier etc) and reduced intelligence (maths goes out of the window, memory goes, i can't think of words, can barely speak) my GPs advice? Give up smoking.
Then about a month ago maybe more (sketchy memory during infection) a post on reddit caught my attention which lead to me posting this.
I went to my GP with the most pertinent, recent papers regarding PANDAS and he was open to the information and gave me another 14 day prescription for antibiotics. At around day 10 i started to feel the mental fog receeding and could feel the physiological (biochemical really) changes in my brain but i knew the strep hadnt gone and reinfection would soon occur so i called the GP for a phone consult and another 7 days antibiotics was prescribed. As the fog was lifting i could feel the mental acuity slowly returning so i set about to really understand what is going on.
The first stumbling block to me is the name
P.A.N.D.A.S; Paediatric Autoimmune Neuropsychiatric Disease Associated with Strep
Pediatric? Huh? I'm 42.
I was pretty sure what was occuring to me was the same as PANDAS, so the next step was to understand what the actual process that leads to PANDAS is and to understand WHY it is affecting me.
The first step is a strep infection (group A strep is mainly documented but B is also at play), generally tonsilitis/pharyngeal infection, this colony starts to produce a group of cells called Th Cells (T helper), specifically Th17, the strep colony expands from the tonsils/pharynx to the nasal cavity and colonises that space, still pumping out the Th17 cells, these Th cells travel from the olfactory bulb down the axons of Olfactory Sensory Neurons crossing the Blood Brain Barrier (B/BB). When Th17 crosses the B/BB it produces interleukin 17 (IL17) which binds to proteins in the brain causing the receptors to misfire, IL 17 also has another function - it further opens the B/BB to more Th17, reinforcing the cycle¹. This series of events causes the basal amygdala to become inflamed as part of the auto immune response³. Antibiotics kill off the strep but the IL 17 and Th17 remain, albeit in lesser numbers; until reinfection when it all starts again but more intensely.
But still, you're 42.
The ASD brain has what is known as a 'permissive Blood Brain Barrier'³. A typical brain becomes less permissive in its prime so post adolescence PANDAS is less likely to occur in NTs, however i think that for those of us on the spectrum it is just put down to our ASD and never properly looked at nor treated.
I have subsequently presented my GP with the research around this and a referral to an immunology department has been made.
This is not a suggested cause for ASD, i have always been an aspie always will be, what this is though is a hidden, underlying condition that massively exacerbates a current condition
I believe this discovery to be significant, this is not my discovery i am merely piecing research together, but it is none the less a lightbulb moment.
As an aspie i find the periods of infection to be the most scary, debilitating experiences i have ever had, i cannot comprehend how this would affect someone non verbal, i have to say in the most strongest terms if you/they have a history of throat infections ESPECIALLY with sinusitis, which have an observable effect upon your/their behaviour then read about PANDAS and the papers referenced at the bottom.
¹ Group A Streptococcus intranasal infection promotes CNS infiltration by streptococcal-specific Th17 cells.https://www.ncbi.nlm.nih.gov/pubmed/26657857
² Blood–brain barrier and intestinal epithelial barrier alterations in autism spectrum disorders https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5129651
³ Pediatric Autoimmune Disorders Associated with Streptococcal Infections and Tourette's Syndrome in Preclinical Studies https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4928151
I have read a lot of research to come to this conclusion, these are a sample that cover what i have said in less papers, if you require more on specifics i can probably guide you in the right direction.
Do you think group b strep might also be a contributing factor my 7 year old daughter nearly died from this as a baby it caused clots on her brain and all sorts of issues, she has always had a low immune system. We are trying to get her a diagnosis but she developed hsp about 2 years ago and this was when she started really having the behaviour issues and the repetitive behaviour got drastically worse sleep has always been a big issue but now it is exhausting! I know the decline is probably down to extra work and stress at school but trying to consider all possibilities
Group b is mentioned in upcoming studies and is also being attributed to PANS/PANDAS, this area of medicine is fairly cutting edge tbh, the whole relationship between the immune system and mental health etc brings so much into question.
It's not strep that actually infects the brain, its our autoimmune system reacting adversly to the th17 and interleukin17, ASD brains already have elevated levels of IL17, the strep raises them further but i dont think they recede to previous levels without conscious intervention. I think the Th17 'overload' acts in a linear manner, ie steadily increasing with each reinfection, whereas the strep is logarithmic it shoots the Th17/IL17 levels up to a peak then when strep is dealt with they reduce BUT to a higher level than before. So basically the effects are left lurking until reinfection when they will peak again, fall, but not decline. So if this whole process was started 7 years ago it could have cycled a few times, gradually reducing function, it's what happens to me, i expect to regress fairly soon which is why i had to put this out there now. :(
https://www.panspandasuk.org/info has a lot of useful info, the one for your GP will be helpful IF you think its appropriate, you know your child, their history etc better than some bloke on the internet :)
This is the hard part now because i don't want to give false hope or promote any sort of quackery or anything like that it is the antithesis of who i am, but at the same time i dont want to be cold, we are extended family after all. So...
Good news is that if it is PANDAS there are tests and potentially treatment.
First tests are nasal and throat swab for strep then Stretozyme, ASO and anti-dnase B bloods. These check the immune response to strep.
There is now also the Cunningham panel which is explained here (it also helpfully explains PANDAS) these tests target the neurological effects directly (no, no brain drilling)
I hope something there is of help, if there is any news or questions (i *should* be recieving treatment before your daughter so i can let you know whats going on) let me know. All the best.
To visually explain my linear logarithmic suggestion
Thank you so much for your response, I will definitely look into the areas you suggested and I no this is no fix ( don't want that) I am just genuinely interested in this line of thinking as it was one of the things we asked when she recovered would it leave lasting effects? We were told no or I don't no!
Many thanks for this, Perdu, it's a well written and very balanced post, and some great sources, which I've added to my reading list.