Photon Turtle

∞/acc — Contributing to the singularity. Severe (LC19/MECFS). Recording fragments of my consciousness while I still can.

[Photon Turtle @PhotonTurtle]

What started as a mild COVID infection has spiraled into an extremely severe case of Long COVID and Myalgic Encephalomyelitis.

Over the past 2 years, I’ve suffered numerous life-altering seizures and have been hospitalized multiple times. The last seizure left me completely disabled—I can no longer sit, stand, or walk. I can’t feed myself. I can’t even brush my own teeth. Every single day, I endure excruciating, relentless pain that never lets up. And because of my neurological symptoms, I can’t interact with the outside world in any meaningful way. I spend all my days with my eyes closed and my ears plugged, suffering. It feels like I’ve been trapped in a dark, silent prison of pain and despair, a form of solitary confinement that no one should ever have to experience. This is truly a living hell.

I grew up in poverty but worked extremely hard and built a successful and joyful life despite countless heartbreaks. All of it came crashing down in the midst of my youth because of a simple infection. I ask myself every day, Why did this happen to me? But I know it’s a question only the realm of the divine can answer.

The medical industry has failed me as it has so many others— there are no clear solutions, no guaranteed treatments, only a few theoretical options that are prohibitively expensive or completely unproven. Myriads of so-called experts and specialists have dismissed and gaslighted us along the way. Research is woefully underfunded.

Still, I’m hanging on the best I can, because I miss life. I miss everyone and everything. I miss the simple joys—hugging those I love, laughing with friends, seeing the world. Within me there is not a shred of giving up, only the light of life. And so I will give it my all until my flame is extinguished.

For those still healthy out there I urge you to help #pwLC and #pwME spread awareness of these terrible diseases. Protect yourself and your loved ones. Please donate to research foundations if you can. To the community and the researchers: I know we can do this. Please keep moving forward towards the solution, believe in our resourcefulness as humans and the power of science. Act with urgency and gravity. Don’t let despair and hopelessness win. I will contribute in all the small ways I still can.

We can do this.

#MillionsMissing #LongCovid #MyalgicEncephalomyelitis

[Photon Turtle @PhotonTurtle]

@cfs_jo Lovely! Keep hanging in there!

[Photon Turtle @PhotonTurtle]

@itsjoshkade @lara64390 Yeah I agree. I probably will give it another shot but subq.

[Photon Turtle @PhotonTurtle]

@DuaneStorey Does iGM always indicate the virus is active or replicating ? Maybe the immune system is stuck on producing the iGM?

[Photon Turtle @PhotonTurtle]

@WIRED Absolute trash of an article. @WIRED you’re a disgusting publication. I would tell you to be ashamed but I suspect you don’t give a shit either way given how you publish this utter imbecilic nonsense.

[Photon Turtle @PhotonTurtle]

@DuaneStorey That makes sense, thanks for sharing. Could you tell me which tests you did that are specific to covid to determine that? I did a few but it’s always only IgG or IgM. Are there other useful ones that are accurate/reliable ?

[Photon Turtle @PhotonTurtle]

@hopefullizzy Hope it gets better for you Lizzy. I’m sharing in the horrible pain and PEM with you.

[Photon Turtle @PhotonTurtle]

@brian_armstrong @ResearchHub Brian, I think infections, even “benign” ones severely accelerate aging and decline. Please invest in a company that can end all disease on Earth. It’s time humanity finally vanquishes Disease and Death once and for all.

[Photon Turtle @PhotonTurtle]

Thank you so much for this study and not giving up on the many patients suffering Dr. Iwasaki. Is there any way for a patient to get tested ror these autoantibodies currently (outside the research setting). I would like to know how to determine if I belong in the subgroup. Thank you. 🙏🏻

[Prof. Akiko Iwasaki @VirusesImmunity]

Excited to share our study by @keylas3 et al. on pathological autoantibodies in people with Long COVID. We asked whether IgG in patients with Long COVID bind to human tissues/antigens and cause pathologies when transferred into mice. With @PutrinoLab

https://t.co/tcowCufWyf

[Photon Turtle @PhotonTurtle]

@markeology Seems CSF issues are quite common in mecfs patients. I really wonder if I have anything similar.

[Photon Turtle @PhotonTurtle]

@NuwsOvDaWorld @katiamek Bless you and your daughter. This is heartbreaking.

[Photon Turtle @PhotonTurtle]

@katiamek @linds_longcovid Well, probably not going to be a popular answer but I guess it’s hope. Yes I’m completely disabled (can’t even sit up or stand at all), and being tortured to death in pain but this disease can go fuck itself. It’ll have to kill me itself if it wants to get me.

[Photon Turtle @PhotonTurtle]

I understand, I feel the same when I see these stories (or even seeing my friends live their best lives while we suffer horribly). And the disease clearly messes with our brains. I’m way more cynical and pessimistic than I used to be. Not to mention fighting constant suicidal thoughts and uncontrollable depression. But it’s not me, it’s not you. It’s the disease. Not your fault. I know it hurts horribly everyday and life is insanely unfair but let’s try our best either way. Don’t give up.

[Photon Turtle @PhotonTurtle]

Yeah I wouldn’t inject it if you don’t trust the source of the peptide, it really could be anything. And unfortunately they didn’t help much either. Try to urgently get your doctor to prescribe ativan to you but don’t take too much, it can cause withdrawals. Guanfacine/Ivabradine and ketotifen could maybe help if you have a lot of dysautonomia or pots.

[Photon Turtle @PhotonTurtle]

Just saw this. Not doing too well myself (also recently was hospitalized). Did you try a bit of Ativan? I’d give more tips but I really haven’t found anything that helps a bit other than that. There are peptides you could try like ss-31, bpc-157, ta-1. Not sure if any works but I’ve tried them. Also try IVIG if you can access it. Hang in there, I know it’s hell. 😞

[Photon Turtle @PhotonTurtle]

@lara64390 Yes I’ve tried the peptides and IVIG. iVIG is usually for immunodeficiency but it’s also for cases of autoimmunity (and SFN) so not necessarily just for low IGs. Some of the long covid doctors recommended it to me early on but it didn’t help much for me (made me crash horribly).

[Photon Turtle @PhotonTurtle]

@lara64390 I haven’t seen anyone (in real life) respond to any of these drugs, especially the more severe people. It’s not your fault, it’s this horrible disease. I just hope research can be faster.

[Photon Turtle @PhotonTurtle]

Ah yes another genius “specialist” MD we have here making bold claims from anecdotal authority whilst ignoring the thousands of patients suffering and hundreds of studies. Clearly we should listen to you instead of our own symptomps because your wifey says so. You really embody the utter stupidity and bottom feeding IQ of your entire field. A great example once again.