#ptlds

[disability-shout-outs]

Shout out to folks with Post-Treatment Lyme Disease Syndrome!

[skys-archive]

I personally think lyme disease has/did become neurological. None of my Healthcare providers really seem to think that (though the doctor i saw today did say something about it) but from everything I've seen both online and from the initial doctor who gave me the diagnosis it makes sense.

Lyme disease is meant to be treated pretty soon after you get it, I think after about a month is when it's considered late stage and is less likely to be completely resolved.

I didn't get my diagnosis until six months after I was bitten. The doctor who treated me initially told us that it could come back and cause issues. When I moved, no one else has said that. I tried to get treatment for two or three years before we insisted on getting blood work for lyme again, and it came back positive. At this point, it had been I think eight years since my initial treatment. I didn't have any improving symptoms.

So many symptoms that I had starting at the time I first began having issues can happen because of lyme disease. Lyme can become neurological, and I started getting frequent migraines and weakness. I started getting psychosis very suddenly, which I have seen linked to lyme disease. And then of course all the normal symptoms like pain and fatigue and overall sickly feeling.

I don't know. Lyme disease isn't really the kind of thing you treat once it gets to this point. I've had these problems for almost ten years now with very little if any improvement. But it still makes me mad that no one will consider that the issue I had, untreated for a very long time and then confirmed to still be in my blood, is the reason for any of my problems. Like the proof feels so obviously there.

I just want to at least know "here is your problem. We can't really treat this." And then get the accommodations I need

[l3mm0nz]

what the fuck what the fuck i JUST found out i had lyme disease once and got treated for it. in like 2014. pretty much every unexplained symptom i have can be caused by ptlds. and i literally have a doctors appointment tmrw so i will bring it up.

if im being honest having these random symptoms the past few years feels like a case i've been trying to solve and i FINALLY have a lead.

[skys-archive]

Okay here's my thoughts on the whole "chronic lyme" thing.

Chronic lyme isn't really a valid diagnosis but NOT because it's "not real" or lyme disease can't cause long term issues. It's not a very "valid" diagnosis because a lot of people diagnosed with it often didn't have lyme disease in the first place.

Obviously these people still have issues, but when the name suggests one thing but the reality of it ends up being more or less "You have pain for reasons we don't understand" it makes it really hard to actually find a way to treat it.

So the more "correct" term is usually post treatment lyme disease syndrome. But that also causes an issue because a lot of people who have chronic lyme symptoms were never treated for lyme disease in the first place. Maybe they didn't go to the doctor or they didn't have the bullseye rash or any number of reasons that meant they weren't diagnosed and therefore not treated. And jt seems to be decently well known that after i believe 30 or so days treatment can be much less effective. So "post treatment" still kind of excluded people and doesn't accurately describe what everyone who's having issues is going through.

"Chronic Lyme Disease" is pretty spot on when it comes to the name. In theory, it should be lyme disease that has caused chronic issues. In execution, however, a lot of people have been diagnosed with "chronic lyme" because they fit the *symptoms* that many people with lyme disease have without actually ever having been diagnosed with lyme disease in the first place or having spirochettes in their blood.

So while, yes, the way chronic lyme ends up being used is not very accurate, it's not because chronic lyme symptoms aren't real.

Also, when someone gets diagnosed with chronic lyme (I remember discussing Justin Bieber before) that doesn't just. Automatically mean they're not disabled. Most likely they do genuinely have issues they just (possibly) didn't have lyme disease. It's not their fault they were given an ineffective diagnosis. It's fine to point out that chronic lyme disease as a diagnosis doesn't really work and isn't technically "real" or useful, but please stop saying the experiences of the people diagnosed with it aren't real.

[skys-archive]

Has there been a link between lyme disease/post treatment lyme disease and AMPS that has been studied. They're both not talked about too much but I feel I see them together kind of often. I don't know maybe it's because so many people who have ptlds their doctors don't believe the lyme disease could still be an issue so they end up diagnosed with AMPS? It's just interesting

[skys-archive]

I hurt so much more in cold and its not even that cold down here. All my muscles and all my bones iughsja. Ouch.

[skys-archive]

Quick ableism rant.

My friend dated this guy and we both cut contact with him like, four months ago? Like October I think it doesn't really matter. But he's like ridiculously obsessed with me and talks about me to everyone who will listen to him and it's kinda fucking creepy. But he texted that friend (who he has ignored for months) about me yesterday and he said all kinds of stuff that honestly I don't really care about at all.

BUT. He was talking about how I used to feel like the two of them never did anything with me and it made me upset. And he told them that he stopped inviting me because so often I would have to cancel plans or leave early because. Yknow. I'm disabled. And he said that "He researched my disability and all sources said that its not that painful". And that he thinks it was maybe just me not wanting to hang with him and like. Actually fuck you.

I'm told every day that my disability isn't real because it's not really medically recognized that you can have lyme disease long term or have long term issues because of it. I had to quit track and field in middle and high school because I just couldn't do it anymore. I had to quit my concert band - something I loved absolutely so much maybe more than anything - because the physical aspect of it was so terrible for me and it was affecting how the directors treated me even outside of the physical parts. I'm terrified of having to give up theatre because I'm having similar issues.

I have been in pain every single day for years now and he has the audacity to say that it's not that painful. He hasn't lived with it and honestly I really hate to know that even when we were friends he didn't believe it was a real problem and thinks I use it as an excuse. It's even worse to actively not invite me because I might have to quit.

I don't talk to him, I've blocked him everywhere and told him not to talk to me but it's. So frustrating how much he keeps trying to drag me back into shit. Like several months ago I cut out all the people and things in my life who were doing me more harm than good and literally every single one of them has tried to pull me back into it.

Like. Leave me alone. Please.

[skys-archive]

I better sleep like a fucking rock tonight omg

I've been visiting family for holidays and was sleeping in a bed that was Not So Great for my disabled ass and then came home but immediately went to a friend's house to do a ghibli marathon (it was absolutely wonderful but I already hadn't been sleeping well) and fell asleep on a couch at weird angle at 4 am which is also Not So Great for my disabled ass and then came home and washed all my things and cleaned for three hours which is, you guessed it, Not So Great for my disabled ass.

I'm so tired I'm so ready to sleep good