Thread by @iiitsdeepa

I am a late 20s "firstwaver." My #LongCovid story began in February 2020.

This is my experience with H.E.L.P. Apheresis.

I arrived in Mülheim, Germany in early November '21 by myself w/wheelchair support. The mobility aid was a necessity. Without it, I would have dealt with an exorbitant HR, difficulty breathing and more all before reaching my gate.

Approximately 4 weeks later with a combo of HELP apheresis and anticoagulant therapy..

My Long Covid was not "cured" by any means. But I noticed an improvement.

I could stand, walk, talk, move for longer. Cognitive function and ability to track were bettered.

Yes, there were still crashes. Several symptoms remained, including but not limited to tinnitus, neuropathy, 'the spins,' and higher amounts of fatigue.

But after nearly 2 years of watching my body crumble, the needle had finally moved.

And this restored some hope.

I'm not here to sell anyone on - or prescribe - anything. In fact, I receive no joy in making my personal matters public.

However, I am a believer in sharing information and experiences, and that is what this is; I am sharing my experience with H.E.L.P. Apheresis in Germany.

I stand to gain nothing from sharing this, apart from perhaps solace in knowing someone out there now has a bit more information.

Take away from my experience what you will. In the meantime, I suggest you join me in keeping an eye out for this research from Prof Pretorius + teams:

https://twitter.com/resiapretorius/status/1463377921024958468

An update:

Since being home for a few weeks now and thus receiving no additional apheresis, I have noticed an overall decline.

I have guesses as to why. That said, am continuing to observe in the weeks to come. And in efforts to help others with #LongCovid, will update here.

Resource: #Longhauler @Girish_cbe outlined a process of detecting microclots in this thread:

https://twitter.com/Girish_cbe/status/1473468843699834885

(personal side-rant: patients *should not* have to seek this info out themselves, but this is the reality of where we are)

📢Tagging to share their experience + for visibility:

@searose2012 @vitemer @james__glen @ahandvanish @LauraMiers @doctorasadkhan @doctorfabrowski @resiapretorius @jencurtinmd @MarkedByCovid @Doctor_IMF @EdoajoEric @WesElyMD @microbeminded2 @jcjackson68 @long_covid @NoLongCovid

📢Tagging to share their experience + for visibility:

@morganstephensa @elisaperego78 @j_b_kennedy @NickGuthe @katemeredithp @DataDrivenMD @DaveLeeERMD