Had my first shot yesterday for the #lymedisease clinical trial. Pretty sure I'm in the placebo group because today my arm feels like nothing happened. 😅😭
Still, happy to be participating. Either it's a really well tolerated shot or I'll be immune to saline in two weeks. Watch out, ocean! 🌊😂😜
@chamberlainnl Yep, I'm 2 shots into that one (and it's my first clinical trial) and ... maybe it's just well tolerated.
I did wish that they could've taken down more of my information when I was at a computer, rather than playing "let's make you spell every medical diagnosis you've ever had while wearing a mask, and take dictation" though.
@dentalflossbay ha, yep! They even had someone on a laptop asking me medical questions when I was in the clinic. Still...hoping it works and they get this thing to market.
@chamberlainnl The tech working with me was pretty thwarted by not having a clear mapping from the items on my meds list, to diagnosis dates. The words "when did you start being transgender?" were uttered, then backpedaled from. I spelled "vaginal atrophy" aloud as requested, without snickering, and I think that goes on the bingo card for medical interactions.
@dentalflossbay ha, oh noooo...! Yeah I had some awkward convos about contraception despite the fact that I have done IVF 3x and absolutely definitely can't have (another) kid I still had to agree to use contraceptives. Also the lady doing mine was reading the list of outdoor hobbies (NGL picnicking made me laugh) and animals and said "yeah this was written by English people so it's really bad". And kept repeatedly complaining about the silly English things.
I'm English 😂
@chamberlainnl I got the idea that they don't interact with actual ticks much: "I usually put the ticks in a jar full of alcohol. Should I keep count? Do you want them?" got some bogglement. (If I find a tick actually latched on, I am to put it in a baggie in my freezer just in case.)
@chamberlainnl Oh, I asked that one and got a different answer!
I saw paperwork that said I'd be unblinded at the end of the study, but not guaranteed a dose if the study is successful. I asked the PI and was told "huh, that's unusual, I would think we'd give you a dose at the end of the study if you end up in the control, and I'll see what I can do about it."
@dentalflossbay oh that's good to know! Yeah they seemed a bit confused. I was later told I could request to know only AFTER the product came to market, if it ever did...🤷♀️
@chamberlainnl Given that there's a protocol for revealing your status (and kicking you our of the study) if it affects your medical care, I would imagine you could reasonably yank on that process once the study is concluded, if nothing else.
@dentalflossbay I asked "Do we find out at the end which group we were in?" - "No".
"Well, what about if the product comes to market, I would definitely want to know then, because if I don't need it again I won't get it." - "umm...no one has ever asked that, I really am not sure but I would guess that...ummm?"
Seriously, no one ever asked that??