r/LongHaulersRecovery

Hi everyone! I am about 80% and getting better every month! I don’t think I can exercise yet but I can go out and live life!

I was severe and bedridden for 9 agonizing months and thought about dying every day. My only symptoms were extreme fatigue and pem and high HR when standing.

Luckily I got into a clinical trial and within about 2-3 weeks I went outside for the first time. I had lost my ability to walk and that slowly came back.

Total time with LC 2.5 years. Tirzepitide 2.5mg also briefly did 1.25. When the trial is over I will probably stay on a small dose and get it through AgelessRx.

I believe my driver was inflammation and an overactive immune system. I also got the vaccine while having LC and that really made me severe so I really felt it was immune activation. No other meds I tried worked. The Tirzepitide reduced my inflammation so my immune system could calm down and heal.

All I can say is keep trying things. Glp1s help with a lot of things so might be worth a try if you can get it.

Feel free to ask me anything!

Hello community!

Here it is, the weekly discussion thread! In this thread you can ask questions, discuss your own health and get help for your own illness and recovery. It also gives all of us a space to get to now eachother a bit better and feel a bit more like a community instead of only the -very welcome!- recovery posts.

As mods we will still keep a close eye on the discussions here, making sure it is a safe space for anyone to talk.

Hi friends, I'm looking for a recovery story that I read here a while ago. It was about someone who found out that they could use nicotine patches to get out of PEM faster, and once they realized that they weren't afraid of PEM anymore and recovered much faster. I think it was posted a couple of months ago.

I hope someone recognizes this recovery story and can point me to the post or the OP. I would like to learn more about this since nicotine helps me a lot, I feel like myself again with just half a 7mg patch, but I haven't figured out how to use it best with PEM.

I've been hesitant to post since I've read stories of relapses, but i feel pretty good about my progress to date, and have been consistent for several months. I would say I'm like 90% recovered. I am back at work full time (remote), socializing, and exercising lightly with weights, though cardio is still an issue. Its been 14 months since onset.

Symptoms: Orthostatic intolerance, nausea, fatigue, light and sound intolerance, panic attacks, tinnitus. Typing that out, It doesn't sound nearly as bad as it felt at the time.

Timeline: 2 months first crash, 5 months noticeable improvement, 6 months, able to walk a bit, hangout with friends and family. 9 months in i returned to work, 10 months working fulltime, 1 year I began working out with light weights again. Now 14 months, I manage my symptoms but I have pretty much returned to normal life.

What seemed to help: NaC and guanfacine. Rest, like 100% laying down rest, then slowly increasing activity and upright time, and increasing water and salt intake to help with Orthostatic intolerance Meditation and breathing excercises were super helpful and was a thing I could do when I literally couldnt do anything else.

What didnt help: LDN (made me drastically worse), nicotine patches, acupuncture, gluten free diet. I dont think I had mcas so I just tried to eat healthy. I'm vegetarian fyi.

What maybe helped: moving to a quieter place and i started a glp 1. Both of these happened while I was already well into improving so its hard to say how much or if they helped.

The below is my whole story

Illness onset:

I got sick and developed long covid about a year ago. I was active, biked to work occasionally and walked everywhere as I lived in a city. First morning I noticed something was wrong I felt completely drained of energy, as I if I was trying to excercise without having eaten. I felt shaky, weak and anxious, and felt an overwhelming urge to lie down. Luckily that day I met with a doctor virtually who said my symptoms sounded like long covid and I should rest (like really rest).

Unluckily to me, resting meant gentle walking...

I began calling out sick from work and trying to see a doctor, went to urgent care and the ER once my symptoms weren't going away. I got all the blood tests and everything looked normal, at fist it looked like i was still fighting an infection, but that cleared up and I was still miserable. And things were getting worse, id go for a walk daily to stay somewhat active, and those walks got shorter and shorter.

About two months in, I had a horrible crash that spiraled, and i went from watching movies on the couch, taking the dog for short walks, and being able to cook short meals to a constant state of panic, needing to black out the windows, and unable to look at screens at all or even listen to sounds (it felt like itching tingling pain in my brain) this deterioration happened over a weekend and then the insomnia hit, with one tachycardia event that sent me back to the ER. (Avoid the ER if you can, they will look at you like you're wasting their time-i had a wonderful nurse but my doctor had the bedside manner of a drill sargent).

We did get in to see a cardiologist who prescribed a beta blocker which I hated, and we got in to see another doctor to get some more bloodwork and a second opinion. His advice was to excercise, dude, two months ago I was biking to work and lifting weights 3x a week. This isnt deconditioning...

Beginning of improvemnts:

I would say the worst part of that lasted a month, I knew about long covid and MECFS, by that point and had little choice to rest so I did. I felt like i was starting at zero, so zero screen time, zero activity. Just bedrest, bathroom and eating. It was awful: scary, lonely and so much boredom. I couldnt even color or read a normal book for two weeks. I used noise canceling headphones, meditated, and cried a lot. After a month my symptoms seemed to improve slightly so I started reading for a few minutes a day, and i would color or just listen to very soft music.

For excercise i would literally just, do a few super gentle stretches and situp in bed for a minute or two (until the head pressure became intolerable) then I began to walk for about a minute. I just listened to the advice of those before me or frequent rest, resting before activities, like doctors appointments. And increasing my activity so slowly. If i got sick or had a small crash I listened and restricted that activity (i learned a phone call with a therapist could crash me).

I saw a neurologist who had treated long covid patients and we went thru options. LDN had already given me a horibble reaction. So we tried NAC and guanfacine which i introduced one at a time, since my experience with LDN left me pretty scared to intro new drugs. I felt like within a week of NAC, I could look at my phone 30 minutes more per day. The guanfacine seemed to help woth sleep which i was super grateful for.

But... i was feeling slightly less awful, and even though i still virtually bedridden, I continued my daily routine of meditation, super gentle excercise, reading and audiobooks. And i began to slowly increase my upright time and activity time. Still though every day I felt sick.

At about 5 months into the illness and 3 months post crash I was going for a daily 5 minute walk, I could watch 30 minutes of TV, and I was reading on a kindle. Then one day about 6 months in, I was like i dont feel sick everyday- like that hangover feeling. I would still have fatigue, and occasional headaches/nausea. This is when I started talking to my job about returning to work.

I began to do a modified CHOP protocol, (reclined excercise) and used the visible app to track my exertion. Visible helped me identify things that used a ton of energy quickly, like showering even in a chair. I used much less energy doing 10 minutes of floor workouts than going for a 5 minute walk. I rested in the living room in a recliner with my feet up. Still spend most of my day like this, when not active.

From there I just continued to increase excercise, walking, screen time and at some point I stopped tracking things. I built up to going back to work by getting on my laptop and simulating work activities, I would check email, and practice design work by watching tutorials and then trying that thing in Adobe software. Started with 15 minutes, lol, and built up day by day to 2 hours per day. Once I got to 4 hours of screen time I stopped limitations it unless I experienced symptoms.

Today, an average 8 hour work day, I dont do much else, maybe a short workout and dinner and some TV. O days off I travel, I go out to eat, and hang out with friend and family. I still take a few daily rest breaks (eye mask and noise canceling headphones) I think we all need this honestly. I began lifting (3 lbs!) weights and doing squats, deadlifts, etc.

I even, on top of my day job, started a side art business, where I sell watercolor prints online and do monthly markets where I sell in person.

I hope I can grow that business but in the meantime, my job is remote and I am grateful, an in person job would be difficult and a physical job where I had to be on my feet all day- not sure if i could do that yet. I still have POTS symptoms but i walk about 6k steps everyday now. I dont run, cardio makes me sick, but i recover quickly, so I dont think I get PEM anymore.

I finally am gettin my story out there, because I think its so hard in the early days, I felt so alone, and hearing from people who went through it and recovered gave me hope. Even just accepting the state i was in helped long before I could get out of bed. Even if I was going to be in a wheelchair, I saw people online living a life in their own way. Improvemnt is possible, and every small thing you can do to manage your symptoms can help you feel 5% better, those percentages add up.

I keep up with the research and still advocate, because even though I'm so much better, I had most of a year just stolen from me. And I'm still not the person I was before this started, I'm lucky to have a job, and my husband who took care of me through the worst. People who go through this need support, treatments and hopefully a cure.

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

Hi all! I'm back to celebrate the one-year anniversary of my recovery from Long Covid (ME/CFS, dysautonomia, mast cell disease, etc). If you missed my recovery story, here it is: This week marks 6 months of 100% recovery : r/LongHaulersRecovery

The tl;dr is that I watched a Dr. Sarno video on TMS and had a conversation with a personification of my Long Covid, which I visualized as a snake wrapped around my brainstem while I was really high a few years before. I explained to it how much it was hurting me and asked it to let me go, and it listened.

I've maintained my wellness by journaling (shoutout to Nicole Sachs), trauma release exercises, EMDR, and an uncomfortable amount of introspection. For the first time in my life, I actually believe that I am in the driver's seat of my body.

I'm generally in the Cell Danger Response camp of ME/CFS. I will never know why I was sick, what was happening in my body, or why talking to an imaginary snake made it go away. BUT, it did, and I'm here to share the good news that I made it an entire year without PEM. IMy hypermobility is much better too. My baseline pain level is a 0, which hasn't been the case since... childhood?

I dealt with really severe anxiety, panic attacks, and night terrors for the first 9 months of my recovery. I'm happy to report that over the last couple of months, this has largely subsided. I credit it to EMDR and some absolutely feral trauma releases. I don't get riled up as easily. Irritations roll off me more readily. I don't ruminate as much, and I don't worry about perfection anymore.

I got COVID over the holidays and had some symptoms flare up for a few weeks. Not PEM or severe fatigue, but some autonomic stuff and a few allergy symptoms. I recovered smoothly. With it in mind that Long Covid happens when the sickness cycle doesn't complete, I drew a bunch of circles throughout the days and did yoga routines that start and end in the same position. I also accepted that I couldn't strong-arm my way out of being sick, and that I had to just let go of control and allow it to do its thing. Weird, yeah, but it worked; that's been the case for pretty much everything else I've done.

I'm tapering off of levothyroxine for my idiopathic hypothyroidism that onset while I was sick. So far, so good.

I had some (probable) mast cell issues before COVID, and those have flared up on 3 occasions over the last year, but they quickly returned to my baseline of no symptoms. I don't have to restrict my diet at all. I continue to take Xolair because sometimes physical and emotional stressors can flare up symptoms. It's infrequent and still profoundly less problematic than it ever was before I got COVID, but I like having the guardrails. Xolair doesn't prevent reactions, but it blunts the severity of symptoms. It's not the reason I'm in remission. It just makes my life a little less bumpy, and also I love that I don't have seasonal allergies, so anyone can pry it out of my cold dead hands.

I'm re-reading The Mindbody Prescription by Dr. Sarno this week. I like having the reminders and it's kind of a comfort book at this point lol. I also got a celebratory fro-yo with a grotesque amount of toppings because that was one of the things I was most excited about being able to eat again last year.

I'm doing great :)

ETA: Please ask your questions in the comments here! I love y'all but I get the same DMs over and over lol it's just more efficient if one person asks and then everyone else with the same question can read my answer!

Hi friends💕 please leave a note on how you conquered the air hunger symptom! Any recovery notes on this specific symptom and/or brain fog I would be so grateful ! I had gotten SO MUCH better for a few months and then had a sudden severe flair when I pushed too hard and have been down for a full month now somehow..

Thank you and bless you all with health ☀️!

One of my main, yet less severe symptoms since this LC journey began is left side gut tightness/discomfort, almost like my colon is swollen or something. Gastro said muscle spasms? I’m not very tolerant to pain of any kind, so I’d say it’s more of a discomfort. It comes and goes. It usually lasts a couple weeks, then disappears at random for weeks or months before returning for another couple weeks or so. This has been on and off since 2021. Even after making a full recovery in 2023 and having lasting recovery for well over 2 years (before catching covid again in 2025 and slightly relapsing), I still had this issue during that time of feeling better. Again much less severe and much less of an impact to my life compared to having a bad run with fatigue or any of the other typical LC symptoms, but it’s definitely noticeable. Has anyone had this and figured it out? Posting here since technically I made a recovery and still feel 95% or more, but have this one lingering issue.

The feeling doesn’t really get any better or worse after a bowel movement or eating any certain way. It kind of just shows up, runs its course, then checks out until next time. Rinse/repeat for years now. I’ve seen others mention a similar issue over time, but it’s definitely far and few between compared to the more debilitating symptoms.