r/LongCovidWarriors

We’ve started to see an increase in people posting negatively about other subreddits.

This is a positive, patient-led, science-focused and united community. The goal of this subreddit is to support people living with Long Covid through evidence-based discussion, shared experience, and respectful dialogue. We encourage learning from one another and keeping conversations grounded in science and lived experience rather than speculation, misinformation, or hostility toward other communities.

A reminder that this subreddit does not allow posts or comments that target, criticize, or negatively reference other subreddits. It is also against the rules here to encourage conflict, stir up drama, or direct users toward brigading other communities. Brigading is a violation of Reddit’s Terms of Service (TOS) and content policy, and any content that appears to encourage or organize it may result in removal and account action.

We take these rules seriously to protect both this community and others. Users who continue to cause disruption, escalate conflict, or repeatedly violate these expectations will be warned and may be banned. In some cases, enforcement action may be taken without prior warning when content violates Reddit’s policies.

Please familiarize yourselves with the rules of this subreddit before posting or commenting. We are seeing an increase in comments that violate the rules of this sub itself. Many behaviors that may be tolerated elsewhere are not acceptable here. Civility is mandatory, and we expect all members to engage respectfully, even when there is disagreement. This sub isn’t for everyone, and that’s okay. It’s important that everyone here understands and follows the expectations of the community.

Thank you to those who continue to create and foster the community that r/LongCovidWarriors has been built on.

I have recovered Im going to share my case story eventually but im busy rn. I need to WARN people away from the CFS group they delete science based recovery stories and are killing people Ive seen them do it for years . They deny it when it happens .I dont care if my view is unpopular Im leaving reddit I have my. life back and i dont fukcing care bc i dont need reddit anymore please stay away from them and other illness groups that justify this , kids are dying and i will NOT be quiet I was severe and almost died myself and had I listened to them ID BE DEAD. I have no idea why they do it my guess its bitter ladies who think no one else should recover bc they didnt fuck that too many young ppl are getting sick and everyone that recovers is a WIN FOR US ALL hang in there yall I SEND YOU MASSIVE SOLIDARITY ESP IF SEVERE. they accuse anyone who recovers of being a liar or 'priveleged' im a survival sex worker lol i have been homeless and the people saying this to me have jobs and normal lives AVOID THESE PEOPLE LIKE THE PLAGUE if you are in any real danger

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?

Welcome! This is a space to take a load off and mingle with your fellow warriors. Say hello. and if the mood and energy strikes vou, let us know a bit about yourself and/ or what's going on.

If you are generally prone to lurk, this is a safe space to just post a quick hello. Feel free to ask a question here that you might not feel safe making a solo thread about.

The intention is to make this a daily thread where we can all touch base and lay down some of our burdens for a while. If vou log on and don't see the Break Room open go ahead and grab the keys and open it yourself. 😄

Hi everyone, I hope you’re all doing ok out there :)

In your opinion, when you’ve been offered iron infusions—have they helped more, or have you had bad experiences?

There are so many horror stories on here that are making me pretty scared to try them, but I also do not know what else I can do bc I cannot take anything that slows motility—like at all, bc slowed motility is the reason I can’t eat the iron-rich foods in the first place…

I have read about gentle versions, splitting the dose, supplementing phosphorus…. But I do have MCAS and dysautonomia etc so I am just so unsure.

Currently, I get like maybe:
~1400 calories on an average day, closer to maybe ~1800 on a really good day (maybe more if I eat even more oil than I already do)
-and sometimes I don’t even know if I get 600.

I don’t count/track and never really have, so I could not tell you if I ate 1200 before covid or 3000, but since I’ve started to keep track, I’m told (again by various AI) that I’m consistently too low, and apparently need a minimum of like 1200 just to function…

My BMI (which I know is a questionable metric but just to get a rough idea) is supposedly ~17.8 (~118 lb), which is not concerningly low (and in all honesty I do not think it’s that much different than I have been for a lot of/most my life, I just used to have a lot more muscle/different composition; and yes, I still get my period, even now, but I was able to eat normally back then/didn’t really think about it.
—So, even if it’s a similar size, it’s a way different body…)

So, my question is: from your own experience (especially if you are similar to me), would you say yes, you would recommended iron infusions, or no, do not recommend?

Also, (if you know), is my food intake/volume really that bad? Or is it maybe just a result of the body wanting to restrict more for purposes such as autophagy?

Also I have:

- precision fermented lactoferrin on its way to me which I’m really hopeful for.

- Copper is also on my radar for supplementing but I want to get accurate blood work first.

- upcoming doctor’s appts to address the dysmotility issues.

Anyone similar/have any recommendations about iron or anything else?

TLDR; I cannot consume enough food/iron due to delayed motility, so am considering temporary iron infusions, and would like to know if based on your experience it helped more or hurt more?

TYIA for your help and time!

Today is the 1st of the month. It's the first of our monthly off-topic posts. You're free to share anything you'd like, whether it's books, movies, or music you're loving lately. Beverages and foods you love. Hobbies and pets you have. Whatever you'd like to share, today is the day! Please post off-topic content in this thread only.

I love our community❤️ Community is so important for mental health and building camaraderie. Many of us can't spend time with family and friends the way we used to. This is a place we can be ourselves, share what we're doing right now, what we enjoy and love, what brings our lives some fun, pleasure, joy, hope, and meaning.

Thank you all for being here. Hugs😁🌿🪷

My cousin has long covid, have been trying to help her find treatment options. I’ve found a few articles which say symptoms can be improved by reducing gut inflammation. Has anyone tried this and what was your experience? Did it work?

Welcome! This is a space to take a load off and mingle with your fellow warriors. Say hello. and if the mood and energy strikes vou, let us know a bit about yourself and/ or what's going on.

If you are generally prone to lurk, this is a safe space to just post a quick hello. Feel free to ask a question here that you might not feel safe making a solo thread about.

The intention is to make this a daily thread where we can all touch base and lay down some of our burdens for a while. If vou log on and don't see the Break Room open go ahead and grab the keys and open it yourself. 😄

NOTE: please discuss the recommendations below with your doctor

 

I would like to add a note on the skepticism in the mainstream media and among mainstream doctors for IVM (the "horse dewormer" drug - Ivermectin)

While it is true that IVM is not a one drug immediate solution for long haulers or post-vax issues

It should be noted that the signal is there for why it should be part of every protocol

 

There are many signals for it's efficacy that early treatment doctors have observed - I have observed it's post-exposure prophylaxis efficacy in households with index cases during the Delta variant - without the prophylaxis the whole household would fall sick - with it, the cases would be restricted to the index cases

 

However there is one place where it single-handedly shows efficacy is post-COVID19 anosmia/Parosmia (ie taste/smell dysfunction - which affects 1/5 to 1/10 COVID19 cases)

This is why I have been suggesting to early treatment doctors (like the FLCCC/IMA) that anosmia is a good way to present IVM - but most of the effort to normalize IVM use has been in arguing for mortality benefit etc

While anosmia remains an easily verifiable metric - within a few days and a few successive cases, a doctor will build up the confidence that this drug does have activity

 

So far I have seen 100% efficacy in all the recent anosmia cases I have seen - which have been 13-14 anosmia cases (this has been from a pool of 100+ COVID-19 cases)

The most recent anosmia (rarer now) reversal was a couple of months ago - 2 weeks of fatigue and anosmia after a minor case of "flu"/covid19

I told her it should reverse within 2 days and should see some relief in the fatigue (having seen this pattern repeat predictably in all previous cases)

And after 1-2 days she was at 100% smell

And cooked for the first time in 2 weeks - ie fatigue was gone

 

And in the months old cases - also I have seen 100% efficacy - with a longer treatment protocol - in the 3-4 cases I have seen

(though I concede this is not enough data and doesn't cover years old cases)

The pattern generally is that for old cases - more than 1 cycle may be needed - so for example 5 days of IVM 0.4mg/kg - split into morning/evening dose - taken with fatty meal or meal

Then can take a 3 day break - if want to avoid any visual disturbance side effects

Then take another 5 day course

Usually I would ask them to increase their Vitamin D levels as well

 

So just from this information, I feel that IVM should be first drug of choice as part of any protocol

Because of it's efficacy against post-COVID19 anosmia (which is a hard problem)

 

In my experience IVM also has been effective in removing fatigue as well for recent post-COVID19 cases - and in some old cases - both long haulers and post-vax

So it should be part of the protocols

 

Also because of the media paranoia created around IVM as some sort of litmus test for sanity or irrationality - I am unsure if the people who "try" IVM actually have used it for more than a few days

Since it is a relatively safe drug - it can be taken for 5 days - take a 3 day break (if you want to avoid the visual disturbances side effect) - and repeated

So my question is how many long haulers are actually trying longer term IVM use as part of their wider protocol

Instead of trying it for 5 days then writing it off

 

Summary: IVM shows single-drug response for some post-COVID19 persistent side effects like anosmia/Parosmia - which have no other comparable treatments (Stellate Ganglion Block SGB comes in a distant second - smell restraining which is the standard of care is not even partly effective) - which alone makes it an essential component to consider for protocols for long haulers - IVM hesitancy may also contribute to shorter duration use (when the drug can be easily tolerated with repeated dosing with breaks)

 

For more information on post-COVID19 anosmia, you can visit:

r/covid19anosmia

r/ivermectin

 

You would think this information would be welcomed on sub-reddits like:

r/covidlonghaulers

r/anosmia

r/Parosmia

But you would be mistaken - as these - and many of the mainstream sub-reddits - as policy - will perma-ban you if you suggest Ivermectin does anything for COVID-19

Recall that during the pandemic, YouTube actually had Ivermectin and Hydroxychloroquine mentioned by name in the YouTube terms of service - as unbelievable an overreach as that may seem, that was the state of affairs during the pandemic

97% retention of participants 64% female 92% of participants taking 26 of the 28 doses

Is administering vitamin B1/B6/B12, and/or prednisolone for patients with PC19S within a RCT feasible in primary care? Are these interventions effective in reducing symptoms and improving quality of life?

https://meeting.egprn.org/foyer/article/aa16c343-535c-48e2-947f-57a19a5c5afd

Hi, Warriors🤍

It’s time for a new community challenge and this one’s designed to boost connection, give hope, and share real things that helped real people this week. No pressure to write long comments. No pressure to be “doing great.” Just one thing that made your week a tiny bit more manageable.

💬 Question:

What’s ONE thing that helped you this week?

It can be anything:

✨ A supplement.

✨ A symptom hack.

✨ A mindset shift.

✨ A small win.

✨ A food that didn’t cause a flare.

✨ A kind moment.

✨ Something that made you smile.

✨ Or even “I rested and survived the week”

If it helped you, it counts.

💡 Why This Challenge Matters

Sharing these moments helps:

⭐ New people find ideas.

⭐ Everyone feel less alone.

⭐ The community grow stronger.

⭐ You celebrate progress you might’ve overlooked.

You can reply with just one sentence or even one word. Whatever you’ve got today is enough.

❤️ Let’s lift each other up

Drop your “one thing” below. Come back later and support someone else. Even simple comments like “same,” “I needed this,” or an upvote can make someone’s day.

We’re in this together. I can’t wait to read what helped you this week 🌿💚

Welcome! This is a space to take a load off and mingle with your fellow warriors. Say hello. and if the mood and energy strikes vou, let us know a bit about yourself and/ or what's going on.

If you are generally prone to lurk, this is a safe space to just post a quick hello. Feel free to ask a question here that you might not feel safe making a solo thread about.

The intention is to make this a daily thread where we can all touch base and lay down some of our burdens for a while. If vou log on and don't see the Break Room open go ahead and grab the keys and open it yourself. 😄

All Pots Symptoms ?

Since developing Long COVID/dysautonomia, I’ve been experiencing very strange and difficult-to-describe cardiac sensations that are not simply “anxiety” or classic palpitations.

I often feel squeezing, pressure, spasms, bubbling/fizzing sensations, or brief “electrical” surges in my chest and around the heart area.

Sometimes it feels like the heart, vessels, or nerves are struggling to coordinate properly or feel clogged or maybe nerves are struggling....

These episodes can happen both at rest and during exertion.

Deep breathing can feel extremely uncomfortable, almost as if something inside the chest is under tension or pressure. I also experience orthostatic symptoms (especially when standing), shortness of breath, dizziness, head pressure, nausea, and strange nervous-system sensations that are hard to explain... plus vision symptoms expecially flash white dots every now and then.

At times the sensations are accompanied by:

sudden adrenaline-like surges

tingling in the scalp/head, neck ,throath pressure and squeeze

chest tightness or fluttering

abdominal gurgling or pressure

tinnitus and ear pressure

feelings of internal instability or weakness

Occasional skipped beats

Despite how alarming these symptoms feel, repeated cardiac investigations have so far been reported as normal:

multiple ECGs

echocardiograms

Holter monitors (including long-duration monitoring)

exercise/cycling stress tests

Heart Mri with contrast

Brain Mri

Multiple ultrasounds

Countless bloods (including cytokines and those fringe ones plus Autoimmune etc...)

Anyway, normal sinus rhythm has been confirmed multiple times, yet the symptoms remain very real and debilitating.

Is any of this familiar to you guys ?

Just trying to make some sense...

As the title says, I'm still having on-going complex shortness of breath problems and I decided to pay for the pro version of perplexity AI (also has agentic functions too); let me just say, the information is so granular, detailed and presented extremely well. I compared it to ChatGPT and Gemini (non paid services) and its just lightyears ahead.

It was giving me options that I'd never even heard of in terms of considerations and things that may work including interactions between current drugs. It also has creation functionality built in so it can create programs, PDF files (I used this to collate information in a document for my upcoming respiratory appointment), and more.

Worth trying if you want to cut through BS and need to research easier.

DISCLAIMER: NOT A REPLACEMENT FOR REAL MEDICAL ADVICE

Welcome! This is a space to take a load off and mingle with your fellow warriors. Say hello. and if the mood and energy strikes vou, let us know a bit about yourself and/ or what's going on.

If you are generally prone to lurk, this is a safe space to just post a quick hello. Feel free to ask a question here that you might not feel safe making a solo thread about.

The intention is to make this a daily thread where we can all touch base and lay down some of our burdens for a while. If vou log on and don't see the Break Room open go ahead and grab the keys and open it yourself. 😄

Warriors! Come out and play-yay-yay!

It's been a while for me...Hope you are all doing OK.

Sorry for the deja vu...Copying and pasting seems easier...

New and improved and not just for NJ! This Wednesday at 1 PM EST, I will help host another session of the purely online support group for people with Long Covid and/or MCCFS. It will last about an hour. DM me and I will share the link before the meeting. Hope you can make it. There just might be some dazzling new features that no other group might have. Please share the word. Wish you lighter symptom days!