This time last year, leokopenic, 112 lbs at 5'8, hair falling out, sores frm various OIs all over my body, laying in bed and trying not to cough so I wouldn't shit my pants - it was a fairly recognizeaboe image. That you call one "ghastly" likely speaks to how you view the virus
AIDS was scary, people went to read ridiculous irrational lengths to avoid percieved exposure. It was something that happened to other people, people not like them. they thought themselves better than that. The remnants of this stigma remain today in so many ways. often subtle
But covid? Folks don't fear it. They know they coupd get it, arent worried. they arent scared because it mild, its over, we have the tools. You do you, its your fault you're vulnerable, don't live your life in fear. Stigma meets cognitive bias.
Folks are fully invested in believing that covid is harmless, so they make excuses when they see such familiar examples of what it can do to them. Deny the similarity, or look the other way. But deep down, its a response to that old stigma. "not me, not that"
To be clear, I'm not picking on @Johanne_speaks a r directing this at them. Their post raised a great point, that I feel needs to be addressed, and starting a new thread seemed better than interjecting this in someone else's.
@Johanne_speaks At tue end of the day I am here to tell everyone - SARS-coV-2 can look a helluva lot like untreated advanced HIV/AIDS. It is our perception that is flawed. If folks feared covid the way they still fear hiv, we could end the pandemic for real.
@Johanne_speaks But that involves realizing that no one's suffering should be repulsive to us - 'cause it frankly makes me real uncomfortable the way this comparison is framed. No one deserves this from either virus - and all deserve compassion and recognition.
@Johanne_speaks Food for thought. In January 2022 I had a cd4 count of 84, reactivated vzv and cmv, candidiasis, and p jirovecii pneumonia. Toxoplasmosis and bartonella later entered the chat.
Sound familiar? Check out these case reports from 1981.
@Johanne_speaks I don't mind being compared - people need to be aware this is what SARS-coV-2 can do to you. But I think in making that comparison we need to be very careful with our language, and not continue to unintentionally perpetrate stigma against people living with HIV.
@Johanne_speaks If you found this thread helpful, tips are appreciated. I am homeless due to my illness since 2020, barely making ends meet for meds & food.
paypal/venmo saltykid41@gmail.com; other details in bio
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my friend was unable to get paxlovid because he is vaccinated (???) despite testing SARS-coV-2 positive on RAT & PCR and having significant acute symptoms including difficulty breathing. I gave him Truvada, he improved rapidly. More details below
IT IS VERY IMPORTANT TO NOTE HE HAD A RECENT NEGATIVE HIV TEST. Please do NOT try this without a dr if you do not know your status. I had an extra full bottle and advised him to consider that a full course for acute infection. He started right at 24 hours after symptoms.
Once his acute symptoms were gone and he tested sars2- on RAT, I advised him to get tested for HEP B before abruptly continuing the drug. Ideally you kbow your status of that before starting but as long as ya dont STOP its not as big a deal. He was - which was good.
I would just like to remind everyone who is so excited about reactivated EBV and CMV that those were the most common early presentations of people living with AIDS in the eighties.
both viruses were initially blamed. Also makes ng that list later was HHV6 (that harmless childhood virus that some MECFS advocates love to point to was ironically first isolated from patients with AIDS in the quest to find a cause).
HHV6 is actually a really fun one because almost everyone had it by the time they entered kindergaryen. It was a mild acute illness that your parents likely dont even recall specifically. What everyone forgot to tell you is it lives in your t cells. forever. integrated in dna
Its a very weird moment when you realize your long covid meets every point on the original criteria for an aids dx but dont score enough points on the nih checklist for it to be considered long covid. Its even weirder when you find yourself typing this on twitter. FML
the 12 symotom bingo card from the NIH
You need 12 points to qualify
i scored 9 AT MY WORST
The original criteria for AIDS dx
i've had pneumocystis 3 effing times, cd4 nadir 84, multiple other infections from "the list" 🤦♀️
We were led down a path of improper terninology when we had none by bad actors and now its harming public messaging.
1/
The minimizers tell us we need to learn to live with covid, but have you ever really stopped to think about what that means?
2/
We use that terminology - "living with..." for one other virus, out of all the viruses that infect humans. One. And now they want us to learn to "live with covid."
3/
My life has been reduced to laying on my cot in an 8x8 cabin, staring at the ceiling and wishing the unbearably hot hours to go by more quickly. So I can sleep, when it cools down into the low nineties at night. It is exhausting to hurt this badly for 14+ hours a day. 🧵
I have started to turn the corner, but it is going to be a long hard fight to ever return to any resemblence of the already low baseline I had this past winter. I can hardly believe almost two whole seasons have gone by in this condition. 🧵
My birthday is next month. I'll be 43. I was 39 when I got covid. The partner I was trying to build a life with at the time died from this a few months ago, after a battle very much like my own. I often wonder how I am even still here. last month, wasn't sure I would be. 🧵