I've noticed an inordinate number of us are DXed with EDS (or other connective tissue disorders.) Here's an interesting blog that connects EDS to AD. There's a wealth of info here if you poke around:
My nephew, age 14, DXed with EDS/POTS, has just been found to have 3 arachnoid cysts at the base of his skull. They are symptomatic and he is scheduled to have 3 surgeries to drain them. The last resulting in the placement of a shunt. Scary stuff.
This doc connects interrupted CSF flow with cyst formation and neurodegenerative disease. Europeans appear to be particularly vulnerable. I have two brain cysts; a pituitary and pineal cyst. The latter is certainly impeding my CSF flow Lovely
Just found this thread. I was dx joint hypermobility syndrome, which of course is really hypermobile EDS but "mild". I am sure my mother has it - loads of osteoarthritis and now RA, hypermobile that I can see in her family going back several generations, her mother and aunt had AD, brother had PD.
Now I gotta go look at that thread connecting EDS to AD ... whaaa! I didn't know anyone else had noticed!
ApoE 3/4 > Thanks in advance for any responses made to my posts.
Very kind of you to inquire, Circ. He's only had one surgery to date, but it's been rough going as would be expected with his other DXes. He's only been able to attend school for a few hours since...Sigh.
My son ended up dropping out of school for almost an entire year at the same age. Following a GI virus, he was unable to eat without severe nausea/vomiting. THAT began the odyssey that got many family members (including me) DXEd with EDS, POTS, NMH, etc. It is so sad to see my nephew go through this.
I'm so sorry. This is really a crappy odessy to have to be on at any age, but at least I can remember a lot of years that were *relatively* normal. Kids with illnesses are sometimes more resilient than adults, unfortunately becoming wiser than their years in order to keep from being any more trouble. Not that anyone makes them feel that way, but a good kid often does.
So sad. Maybe we need an awareness march on Washington, for more funding too ... but what in the heck would we call all this!!!!! No one knows the origin of all these interrelated issues. Unless it's civilization itself (!). I keep thinking about those Ikarians and their laid back lifestyle. I've been thinking about putting posters of Ikaria all over my walls and just soaking in the atmosphere through them. Or maybe a collection from all the blue zones and not have anything else on my walls. I'll bet it would help my neurons!!!! Second day of Greek coffee and I think it's a better gig than our American, hit ourselves over the head coffee ways. More ritual, less caffeine per cup, sip it all day.
But I digress. Tell your nephew there's a gal in South Carolina rooting for him!
ApoE 3/4 > Thanks in advance for any responses made to my posts.
Came across this interesting and rather unsurprising notion that Lyme (probably also mold and other mycotoxins) may exacerbate EDS or cause EDS-like symptoms in those who didn't have them before. This is a 2012 article, but I hadn't yet heard of or considered the possibility that microorganisms and mycotoxins might directly compromise connective tissue. Actually I haven't read this yet to see if it's mast cell activation as an intermediary doing the damage (since mast cell activity can remodel connective tissue) or whether it's some other way Lyme et al might mess us up. I'm getting closer to doing a Lyme test even though I have no memory of ever being bitten by a tick. OTOH I'm already using Biocidin, so that might monkey with the results.
circular wrote: Actually I haven't read this yet to see if it's mast cell activation as an intermediary doing the damage (since mast cell activity can remodel connective tissue) or whether it's some other way Lyme et al might mess us up. I'm getting closer to doing a Lyme test even though I have no memory of ever being bitten by a tick. OTOH I'm already using Biocidin, so that might monkey with the results.
I had a positive DNA Connexions urine test for Lyme co-infections despite no known history of tick bite. I continue on Biocidin and GI Detox to keep me in a holding pattern while I continue to live in a "house of mold" pending appropriate mold remediation. (Analogy: airplane circling the airport waiting for permission to land, hoping that the plane doesn't run out of fuel) My FM MD thinks I'm doing remarkably well with my circling act (plane not drain), but it's easy to fool people over the phone. Once I get through mold remediation and have an appropriate HERTSMI-2 score (fingers crossed), it makes sense to recheck the DNA Connextion as well as my TGF beta and MSH levels.
Lovely
Still found the connections interesting.
Once I get through mold remediation and have an appropriate HERTSMI-2 score (fingers crossed), it makes sense to recheck the DNA Connextion as well as my TGF beta and MSH levels.