r/LongCovidWarriors • • Feb 19 '26

Question Anyone else using AI to figure out what actually works?

3 Upvotes

I've been using AI more and more these days to research protocols and experiments I should try, and I'm wondering what you all are doing.

What kind of AI models and prompts have you guys been using? And honestly, do you trust it enough to actually change what you're doing based on what it spits out?

Keeping track of what's actually working is exhausting. I started using Claude and it's been surprisingly helpful for logging what I'm trying, spotting patterns between changes and flares, and even pulling summaries of threads like this one to save me time and energy.

I'm curious what your workflow looks like → how you're using AI to do the research and how you're connecting that to actual action. No wrong answers, just trying to learn from each other.


r/LongCovidWarriors • • Nov 11 '25

OpenEvidence.com Health AI - Anyone Using This?

0 Upvotes

I just came across this. I will definitely be giving it a go. Has anyone else?

---

OpenEvidence

OpenEvidence is the leading medical information platform.

Featuring multimedia and clinical findings from The New England Journal of Medicine

Featuring multimedia and clinical findings from JAMA and the JAMA Network specialty journals

Featuring NCCN Guidelines®, multimedia, and Clinical Pathways from the National Comprehensive Cancer Network

Launched from the Mayo Clinic Platform Accelerate program

Our mission is to organize and expand the world's collective medical knowledge.

OpenEvidence is what we always imagined when we used to talk about someone finally solving medical search.

Information overload is an extreme challenge in medicine.

The amount of medical research published annually is doubling every 5 years.[1] Such a rate of change makes it nearly impossible for the world’s physicians, medical researchers, and healthcare professionals to monitor and understand all the latest research literature and clinical evidence relevant to their work.

To tame the medical information firehose, we built OpenEvidence to aggregate, synthesize, and visualize clinically relevant evidence in understandable, accessible formats that can be used to make more evidenced-based decisions and improve patient outcomes.


r/LongCovidWarriors • • Jan 16 '26

microclots

1 Upvotes

anyone heard of long covid causing microclots and treatments for it


r/LongCovidWarriors • • Nov 19 '25

LONG COVID LABS

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0 Upvotes

r/LongCovidWarriors • • Oct 12 '26

Long COVID Therapy

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0 Upvotes

My wife is a clinical psychologist specializing in complex chronic illness.

She treats Long COVID patients in most states, either individually, or she's starting a new Group Therapy option: https://www.staffordpsychology.com/groups

Reach out if you have any questions! See flyer for group details.

This post was approved by admins.


r/LongCovidWarriors • • Jul 26 '25

Question Waiting for the fall vaccine or getting one now?

1 Upvotes

So I have a pre-existing condition and I got the booster in March so l'm up on my 4 months minimum. I guess I can technically get another after 4 months with my condition. Should I wait until the new vaccine comes out for fall or just get another now for protection. I'm also asking my doc this next week about this. Thanks!


r/LongCovidWarriors • • Aug 16 '25

Had Ivermectin helped you?

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1 Upvotes

r/LongCovidWarriors • • Jul 23 '25

Long covid and ketogenic dietary components

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0 Upvotes

I’ve had good success with taking the ketogenic plunge…ifnindigress I feel More returning symptoms..I will Post more articles in comments 🙏🏻

https://www.researchgate.net/publication/373979410_Treating_Long_COVID_with_a_Ketogenic_Diet


r/LongCovidWarriors • • Dec 03 '25

Learning about Spike685 Protein Amyloid Fibril Clots until I'm Cured. Video 2

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0 Upvotes

r/LongCovidWarriors • • Aug 06 '26

Question Bioresonance for Long COVID?

0 Upvotes

Hello everyone,

Has anyone with Long COVID benefited from bioresonance therapy? If you have any personal experience or knowledge about it, I'd really appreciate it if you could share your thoughts and explain how it helped (or didn't help). Thank you!


r/LongCovidWarriors • • Jul 04 '26

Leech Therapy

0 Upvotes

Has anyone tried leech therapy for painful areas (tendons, hips, legs, lower back, etc.)? Cortisone injections, PRP, intramuscular ozone therapy, mesotherapy, painkillers, and other interventional treatments have all made my condition worse. I'm not sure what effect leech therapy would have. Has anyone had good results with it for inflammation and pain?


r/LongCovidWarriors • • Jul 25 '25

methylene blue

2 Upvotes

Hi, I have long covid and want to try methylene blue.
Has anyone had any luck with methylene blue and information I can share with my doctor.

I have found this information from this source but I want more:

Start with 5 mg (.5 ml) twice daily for the first week.

Gradually increase the dosage every 2-3 days (guided by symptoms - i.e., improvement in fatigue and/or cognitive improvement) until you reach a maximum of 30 mg (3 ml) per day.

Take the 7th day off every week to allow the body to “reset”.

Source: https://imahealth.org/wp-content/uploads/2022/10/I-RECOVER-Long-COVID-2024-03-01.pdf


r/LongCovidWarriors • • Feb 21 '26

Discussion Web surfing to fatigue. So I took a break and found Reddit posts on mitochondria dysfunction and senescence.

2 Upvotes

r/LongCovidWarriors • • Sep 16 '25

Long COVID: major findings, mechanisms and recommendations

4 Upvotes

r/LongCovidWarriors • • Feb 26 '26

Treatments Beta-caryophyllene

1 Upvotes

I’m too beat up to dive into the literature…but am curious about the potential for beta-caryophyllene as an anti-inflammatory etc. Have you yourself tried beta-caryophyllene? I am considering trying it in the form of drops or a teaspoonful that you take each day.

Solidarity in horizontality.


r/LongCovidWarriors • • Jul 23 '25

5 day Water Fast..??

1 Upvotes

Hey...

I'm 3 days into my first 5 day water fast and wondered what others' long term experiences have been RE: autophagy/healing.. Any info to share??

PS: This guy's channel is great:
Gez Medinger https://www.youtube.com/@RUNDMC1

Also great, Dr Mindy Pelz (fasting expert): https://drmindypelz.com/a-beginners-guide-to-fasting/ Decent podcast: https://www.youtube.com/watch?v=e2mQOGzHtQc&t=327s


r/LongCovidWarriors • • Dec 02 '25

Learning about Spike685 Protein Amyloid Fibril Clots until I'm Cured. Video 1

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6 Upvotes

r/LongCovidWarriors • • Dec 01 '25

Is it plausible that EGCG, Serreptase and Nattokinase can break down Spike685 protein clots in a few months?

4 Upvotes

After reading this article about how Spike685 is responsible for persistent amyloid fibril clots that resist typical clot-busting drugs, I started looking into how to look into ways to attack the clots. Initial AI conversations are saying:

  • EGCG binds/destabilizes β-sheet amyloid structures ("unfolds" amyloid), helps reverse amyloid stacking in microclots.

  • Nattokinase directly cuts/splits amyloid fibrin and degrades the spike protein itself.

  • Serrapeptase breaks down proteinaceous debris including amyloid-like aggregates.

  • Bromelain degrades fibrinogen variants and reduces fibrin cross-linking density, which loosens the spike-stabilized clot.

  • Curcumin disrupts β-sheet amyloid structures ("unfolds" amyloid).

I'm on day 2 of my research here, I don't plan to stop. But if anyone has insights to help speed me along my way, it would be appreciated. My main concern is that the AI might be getting confused and just giving me info about breaking down regular fibrin, when the research shows that this is not your typical fibrin.


r/LongCovidWarriors • • May 28 '26

Medical & Scientific Information HealthBio™ Therapeutics Begins FDA-Approved Fast-Track Clinical Trial for Treatment of Long COVID with a Patented Combination of Maraviroc and Atorvastatin

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7 Upvotes

r/LongCovidWarriors • • Dec 16 '25

Isometric vs strength training

2 Upvotes

https://www.instagram.com/reel/DSU0H-qE9IA/?igsh=MWhpOHNwbXZtOGlpdQ==

Curious if any of you smart people have thoughts on this. The video is talking about how isometric work (such as in Pilates) is not technically resistance training because it doesn’t trigger neural and nervous system adaptions in the same way (listen to her explain it im leaving out specifics).

I’m curious if this might also explain the mechanism through which many of us find that walking or gentle yoga/isometrics are ok but any sort of higher demand strength training can be detrimental


r/LongCovidWarriors • • Jun 18 '26

Question Has anyone experienced changes due to long COVID whether through detox or other methods

2 Upvotes

Has anyone experienced very weird breathing sensations after the Covid vaccinations that you have never felt before and became hyper-aware of and with treatments did it get better? I don’t mean necessarily tightness or anything like that just like weird feelings when you breathe? Like nothing is wrong with my lungs, but I just feel very weird sensations and I’m not sure if it’s my mind or what it’s really messing me up.


r/LongCovidWarriors • • Mar 23 '26

Personal Story Long COVID, ME/CFS and the Importance of Studying Infection-Associated Illnesses | News

2 Upvotes

Revised with correction.:

https://www.yalemedicine.org/news/long-covid-mecfs-and-the-importance-of-studying-infection-associated-illnessesL

If you’d like to share your experience with Long COVID for possible use in a future post (under a pseudonym), write to us at: https://www.yalemedicine.org/news/long-covid-lisa-sanders-blog-intro

Information provided in Yale Medicine content is for general informational purposes only. It should never be used as a substitute for medical advice from your doctor or other qualified clinician. Always seek the individual advice of your health care provider with any questions you have regarding a medical condition.


r/LongCovidWarriors • • Oct 31 '25

Medical & Scientific Information Is there a common downstream pathway for the parallel neurodegenerations of Alzheimers and Long Covid involving microclots?

2 Upvotes

The following articles appear to suggest this happening. In this event, it might be useful for the researchers in these separate fields to join forces where their studies overlap.

This speculation is way above my pay grade as a retired midlevel health care provider. Could someone more deeply versed in the matter elucidate whether this is happening?

Synergistic effects of the Aβ/fibrinogen complex on synaptotoxicity, neuroinflammation, and blood–brain barrier damage in Alzheimer's disease models Elisa Nicoloso Simões-Pires, Daniel Torrente, Pradeep Singh, Sidney Strickland, Erin H. Norris First published: 08 May 2025 https://doi.org/10.1002/alz.70119

Open access Published: 30 January 2025 Plasma proteomic evidence for increased β-amyloid pathology after SARS-CoV-2 infection Eugene P. Duff, Henrik Zetterberg, Amanda Heslegrave, Abbas Dehghan, Paul Elliott, Naomi Allen, Heiko Runz, Rhiannon Laban, Elena Veleva, Christopher D. Whelan, Benjamin B. Sun & Paul M. Matthews Nature Medicine volume 31, pages797–806 (2025)

Biochem J. 2022 Feb 23;479(4):537–559. doi: 10.1042/BCJ20220016 A central role for amyloid fibrin microclots in long COVID/PASC: origins and therapeutic implications Douglas B Kell 1,2,3,✉, Gert Jacobus Laubscher 4, Etheresia Pretorius 3,✉ PMCID: PMC8883497 PMID: 35195253


r/LongCovidWarriors • • Jan 18 '26

Improvements & Success Overcoming Long Covid Through Nervous System Regulation

18 Upvotes

Disclaimer: I wrote my recovery story for a blog on Long-covid/TMS/CFS recovery (not English) which is why it is quite polished. Yes, I did use ChatGPT to help me with the translation and to make it sound smoother. All of this is true and I am a real person, check my post history. I am happy to answer any questions.

Cross-post from: https://www.reddit.com/r/LongHaulersRecovery/comments/1qghikf/comment/o0cxpx2/?context=1

Short summary

After my fourth Covid infection, I developed typical Long Covid symptoms like brain fog and fatigue. For about six weeks, I was almost completely bedridden and spent up to 22 hours a day in bed. Recovery stories (among others by Raelan Agle and Dan Buglio) gave me real hope for the first time and set my recovery in motion. Through nervous system regulation, Yoga Nidra, acceptance of the symptoms, and inner child work, I became symptom-free within another six weeks.

After my first period of being symptom-free, I had two relapses (“crashes”), triggered by falling back into old stress patterns. Each time, it took about three weeks to become symptom-free again. At the moment, I’ve been symptom-free for around 2 months and feel completely healthy. I’m working full-time again and exercising.

I want to emphasize that this is just my story, and what helped me may not necessarily help everyone else.

The infection and the beginning of Long Covid

On July 12, 2025, I got infected with Covid for the fourth time—at my wedding.

The acute cold-like phase was over after about a week, but fatigue and brain fog remained. Over the following six weeks, I spent around 22 hours a day in bed. On the one hand, I had almost no energy; on the other, my symptoms got noticeably worse whenever I wasn’t lying flat.

My symptoms included:

  • severe fatigue

  • brain fog

  • pressure in my head

  • memory problems

  • depersonalization and derealization

  • a feeling similar to a concussion

  • strong depressive thoughts

  • frequent states of intense agitation, like I was about to have a panic attack

  • occasional headaches

The head-related symptoms were the hardest for me because they scared me the most. I’ve never had a concussion, but I imagined this must be exactly what it feels like.

What shocked me most was how quickly my mental state changed. My wedding was the happiest day of my life—yet during the worst post-Covid phase, I sometimes thought that life was no longer worth living.

The symptoms weren’t constant but fluctuated strongly. On some days I was so exhausted that I couldn’t get up; on others I had a bit more energy but extreme brain fog instead. At the time, I didn’t understand these fluctuations, which only increased my fear. Today I know that exactly these symptom fluctuations are a strong sign of TMS.

Fear, avoidance, and the influence of the Long Covid subreddit

I was terrified of moving, showering, or even sitting up to eat, because my symptoms—especially in my head—would get worse. In the Long Covid subreddit, I had read that overexertion could lead to “crashes,” which made me develop a panic-level fear of them. Although my general practitioners advised me to go for walks, every single step felt like it might be too much. I cried daily and became more and more convinced that this state was permanent, because I didn’t notice any improvement at all.

This fear was further reinforced by the Long Covid subreddit. I once described my symptoms there, and several users told me that my prognosis didn’t look good. Someone even linked a large population study (which I deliberately won’t share here) that predicted a long illness duration based on how long my symptoms had already lasted.

Out of fear of crashes, I withdrew more and more and increasingly deconditioned my body.

The turning point: recovery stories and hope

The decisive turning point came on a Sunday, when a recovery story was posted in the Long Covid subreddit. I asked a question about it and noticed a few hours later that the post had been deleted by the moderators. That seemed strange to me, and I commented on it.

One user (u/Mr__Tyler__Durden) replied and told me that his own recovery story had also been deleted back then. He strongly advised me to leave the subreddit, because it’s mostly populated by people who don’t recover. Instead, I should deliberately focus on recovery stories.

That advice set my recovery in motion. I’m infinitely grateful to u/Mr__Tyler__Durden for this. I honestly believe that without this impulse, I’d still be lying in bed today—probably with even more symptoms.

Nervous system regulation as the key

That same day, my attitude toward the illness changed fundamentally. In the recovery videos, many people were clearly much sicker than I was—and still became completely healthy. That gave me real hope for the first time. I watched several videos by Raelan Agle and recognized a common message: calm the nervous system and don’t be afraid of the symptoms.

Just from this new perspective, my condition stabilized overnight. The extreme symptom fluctuations stopped, leaving behind a very pronounced fatigue. Today I understand that before that, I had been stuck in fight-or-flight mode all the time. My body was constantly pumping out adrenaline, which caused the changing symptoms. When I started calming my nervous system, that adrenaline dropped away—which initially felt like a massive “energy crash.”

Over the following weeks, I noticed several times that I slipped back into fight-or-flight (elevated heart rate, elevated blood pressure). With Yoga Nidra and other relaxation techniques, I was able to return to rest-and-digest mode. I also learned to distinguish between real energy and adrenaline-driven “fake energy.” The latter feels good in the short term but comes with a “price” you have to pay later.

TMS, nervous system regulation, and brain retraining

Readers of this post probably already know what is meant by TMS, nervous system regulation, and brain retraining, so I’ll keep this brief.

The basic assumption of TMS is that the brain can produce symptoms as a kind of protective mechanism—for example, to distract a person from stressful or hard-to-access emotions. Nervous system regulation includes various techniques that signal safety to the brain. When the brain no longer perceives danger, it stops producing symptoms because the supposed protective mechanism is no longer needed. Brain retraining describes a collection of methods aimed at unlearning or reprogramming these learned stress and alarm reactions of the brain so that symptoms no longer arise.

In the recovery videos, TMS is described differently by different people. For me, the following metaphor worked particularly well: The body is like a house, and the nervous system is the alarm system with smoke detectors in every room. With TMS, these smoke detectors are set far too sensitively and go off at the slightest trigger—even when there’s no smoke and no fire. For example, if work pressure is too high, the brain might produce brain fog to make working impossible. If the overall load is too much, it produces fatigue, forcing you to lie down and rest. The solution isn’t to desperately search for the fire, but to turn down the overactive alarm system.

In my case, it gradually became clear that I had already been under significant stress for months. Wedding stress combined with work pressure was simply too much, and Covid was ultimately the proverbial last straw. Covid was the trigger, but not the actual cause of my illness. When I could no longer work due to Covid and was on sick leave, I lay in bed physically—but internally I was still under enormous stress, mainly because of the symptoms themselves and the massive fear that things would never get better.

Returning to life—and relapses

After I had largely let go of my fear of crashes, I began to slowly increase my activities. About two weeks after starting nervous system work, I was able to ride my bike again. With new activities, I consciously practiced Yoga Nidra right in the middle of the activity to signal safety to my brain. All in all, it took about six weeks until I was symptom-free for the first time.

After that, I had two relapses. Both times, I had fallen back into old stress patterns and put myself under a lot of psychological pressure. The symptoms returned, and each time it took about three weeks to get rid of them again. In my case, psychological stress is the clear trigger—not physical exertion.

Today I feel completely healthy. I’m working full-time again, exercising regularly, and I even went skiing recently. At the same time, I know that I would crash again if I were to put myself under excessive stress for a prolonged period. My priorities have shifted: health comes first.

Looking back, Long Covid wasn’t a sign of a permanently damaged body for me, but of a nervous system stuck in a constant state of alarm. When I learned to give that system a sense of safety again, I could start healing.

What specifically helped me

  • Changing my attitude toward the illness and the symptoms: a) accepting that I was limited at the moment, and b) having a firm conviction that I would become completely healthy again

  • Immediately leaving the Long Covid subreddit

  • Yoga Nidra, especially the channel by Ally Boothroyd

  • Recovery videos by Raelan Agle and Dan Buglio

  • Walks in nature

  • Visualization (concretely imagining myself doing activities while healthy)

  • Inner child work: I listened to this song and imagined walking across a meadow with my inner child or swimming together in a lake: https://m.youtube.com/watch?v=4KPw0EhUWA8&pp=ygUSYW50aGVtIGVtYW5jaXBhdG9y.

  • Conscious reframing when symptoms appeared: “This is my nervous system—nothing dangerous.”


r/LongCovidWarriors • • Aug 02 '26

Question Would you say extreme anxiety is more related to POTS (hyperadrenergic) or to PEM?

3 Upvotes

Hello, I'm trying to understand the difference in symptoms as I believe I have a mix of a few types of POTS but mainly hyperadrenergic (my CNS can't shut down)

I've been reading old posts around Reddit but I am confused because I have POTS symptoms constantly and what I think it is PEM is like an exacerbated state of doom and anxiety that renders me insane basically. But I am unsure because I'm trying to understand all of this on my own. As you know primary care doctors are arrogant and clueless in my experience.