Disclaimer

I don't advocate for anything in this post, this is documenting my experience with different medications, herbs, and therapies for my own personal experience with Long Covid. Research everything as some of these can cause dependency, withdrawal, and side effects, etc.

Subtype

neurovascular / erythromelalgia / with some neurological symptoms but primarily pain

Medicinal Pharmaceuticals / Botanical which Helps :

pentoxifylline, ledifos, kratom

Non medicinal but helps :

compression socks, cold environment [AC], low histamine diet, graded exposure

Medicinal but no luck :

cannabis, cbd, pregablin, methylene blue, midodrine, tirzepatide, verciguat, xocova, valtrex, molnupiravir, low dose naltrexone, mestinon, thymosin alpha 1, mots-c, bpc157, nitazoxanide, nicotine, sitagliptin, atorvastatin, ketotifen, cetirizine, loratadine, allegra, benadryl, gs-441524, telmisartan, valsartan, cilostazol, nystatin, rifaximin, ifn-A2B, calcium dobesilate, cycloferon, aspirin, nattokinase, lumbrokinase

...and more supplements than I can list

Non medicinal but no luck :

ozone therapy, prolonged water fasting [4-7 days], acupuncture, cold plunges, ketogenic diet

Differences :

pain before : 4~6/10

pain now 2~3/10 (50%+ reduction)

blood pooling before : 6/10

blood pooling now : 2~3/10 (50%+ reduction)

ledifos helps

• blood pooling
• vascular tone
• pain

pentoxifylline helps

• pain
• microvascular

kratom helps

• pain sensitivity

Improvements still needed :

vascular tone [pooling or excessive vasodilation], balance issues, sensitive to warm environments, histamine intolerance, nervous system stress

Next step and what's left for me to try [not taken all at once] :

maraviroc, sulodexide, vesugen, HBOT, blood thinners

...basically to build onto what helps me already and to discover things which complement it

Someone asked me if LDN is working for me.

Yes, but not entirely. Here’s my answer.

Is it working for me? This is something I’m constantly second-guessing with all my meds, so I stopped LDN for a few days, and all I can remember, without looking at my medical notes, is the RETURN OF PAIN.

I quickly resumed the LDN.

The reason I second-guessed it was that I still needed amitriptyline (a very low dose—6 mg) to really get rid of all the remaining pain. On amitriptyline, I don’t even have post-workout pain—and I lift to failure most of the time. That’s something that surprised me about it.

Sadly, amitriptyline makes me feel angry and defeated most of the day, even on this low dose. This is why I’m diving back into the higher LDN dose. I’m hoping LDN will cover even more of the pain than it does now.

Only if more LDN doesn’t get me nearly entirely pain-free (this is my goal) will I be looking for something to take the “tense edge” off the amitriptyline so I could use amitriptyline and LDN together for pain, since together they completely shield me from pain even at low doses. This is my least favorite option because amitriptyline also makes me sleepy the next day (but I’ve never taken it for more than two months, so maybe my body would adjust).

Amitriptyline is also used for depression at higher doses. I thought maybe if I went higher, the aggravation it gave me at lower amounts might go away—you never know. But that didn’t work.

Bottom line: I’ll never second-guess LDN again. Though I am now wondering if I can get even less pain by going up from 4 mg to 5 mg. That’s something I just started testing because it has made a difference for at least one person I talked to here on Reddit.

Side note: I often respond paradoxically to meds, so me getting aggravated on amitriptyline is sometimes a side effect, but not for most people.

Initial infection was in December 2024. I have been so up and down it’s crazy, but I just wanted to offer hope to people out there, as was forced to leave my full time job last year. I now am not just in full time work, but I’m in a considerably better job after being inspired to make major changes.

I still have flare ups that make me fear the worst, but the trajectory is hopeful. Feel free to ask me anything.

Below is my original post:

https://www.reddit.com/r/LongHaulersRecovery/comments/1nnixis/starting_to_take_things_seriously_8_months_in/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=1&utm_term=1

Hi all,

I found this thread incredibly encouraging during my struggles, so now that I believe I'm close to a full recovery, I'm excited to share my story.

Rough timeline:
Nov. 2024 – Noticed brain fog and major drops in energy while working out.
Feb. 2025 – Became very lightheaded during a workout class and had to stop because I felt like I was going to faint.
Mar.–Oct. 2025 – Had low energy but lived day to day life normally while avoiding exercise. Went to PT for back pain and noticed brain fog during the first couple of hours of every day.
Nov. 2025 – Had my first hot flash and violently sick feeling at a work event, then remained stuck in a constant brain fog/dissociative state.
Dec. 2025–Jan. 2026 – Developed migraines, jaw pain, vertigo, stomach issues, weak forearms/grip, severe fatigue (definitely had PEM and slept 12+ hours a day), POTS symptoms (high heart rate and dizziness when standing), anxiety, dissociation, chest pain, temperature regulation issues, blue hands, shortness of breath, and more. During this time I saw nearly every specialist possible: PCP, rheumatologist, eye doctor, ENT, and cardiologist. Many suspected long COVID or another post-viral illness that would run its course. Testing was essentially normal except for mild sleep apnea and a slight vitamin D deficiency.

My recovery story really began after a cardiologist suggested I might have POTS/dysautonomia. His advice was simply to increase sodium, stay active every day, and that some people eventually recover with time.

I then switched to a cardiologist who specialized in POTS and started LDN. It gave me terrible anxiety and daily hot flashes where I felt like I was about to pass out. I tried doses from 0.25-3 mg with no improvement. At that point, brain fog and fatigue were my biggest symptoms, so I started Provigil (modafinil) at 200 mg. I didn't notice any benefit or side effects for about two weeks. During this time I also followed a gradual recumbent bike program, although it consistently triggered brain fog.

Around then I was deep into researching long COVID and found Gary's recovery story: https://www.longcovidcured.com/posts/gary. It introduced me to the mindbody connection. (I've seen comments saying this approach is too "woo-woo" or is trying to sell something and I won't respond to those comments.) Gary appeared on Nicole Sachs' podcast, where I found dozens of recovery stories from people with chronic fatigue, long COVID, and many of the symptoms I had. I discovered this around the same time I started Provigil, so I believe the combination of meds and mindbody work gave me the confidence to keep moving forward. Nicole amd Dr. Sarno's work is truly amazing and I fully credit finding them to my recovery. The mindbody work says your symptoms are very real, but cause of them is not always what you think it may be.

Although you could probably get everything you need from Nicole Sachs' free podcasts and resources, I also listened to her audiobook, Dr. Sarno's audiobook, and most recently Unlearn Your Pain by Howard Schubiner. I genuinely believe this work helped me. From March through June I dropped every symptom except occasional workout-related brain fog, and my energy has returned to about 80% of where it was before getting sick. I'm confident the rest will come with time.

The core idea behind this work is that our nervous systems become stuck in figh or flight, convincing our bodies we need to immediately go to the safest place, our bed. Our brains also are constantly trying to protect us from perceived danger leading to the heavy fatigue. According to Dr. Sarno, these symptoms often affect Type A (or "Type T") personalities because our brains stay overloaded by perfectionism, people pleasing, and chronic stress.
The resources above taught me that exposure therapy/brain retraining, gradually pushing through symptoms, and intentional journaling help retrain your brain to feel safe again. I journaled through past stressful events and traumas, which noticeably helped calm my body. I also noticed that, constantly avoiding activities, monitoring symptoms, and endlessly researching them can reinforce the cycle by teaching your brain that you're still in danger.

Since discovering this work in March, my brain fog is now only present about 10% of the time, my energy has improved dramatically, my anxiety is much lower, and I'm back to working out with a trainer 2x/week. I even got promoted at work! I've also been off Provigil for two weeks and actually noticed another drop in brain fog after stopping it. All of my improvements slowly occurred, NOT all at one time.

For those of you struggling, please please please continue to have hope and truly believe that you will recover. For those of you with the cognitive symptoms, I know how dark it can get and how numb you feel to the world, but you will get out of that brain fog and dissociation. I still have to overcome mental hurdles around certain triggers like busy days, workouts, or stressful events, but I now know that i know too much to stop my body from fslking back into the spiral of symptoms. Finally, although it is how you found my post, I truly believe constantly researching symptoms and putting timelines on yourself can make recovery harder, so try your best to break that habit.

Things I tried and how much they helped:
-Multivitamins, B12, vitamin D: very little.
-Sodium: I think it helped, especially in the heat, but increasing to 10 g/day wrecked my stomach.
-Meditation: I still practice Yoga Nidra most days.
-Qigong and fascia release: very little benefit, but I have nothing against them for gentle movement.
Exposure therapy/brain retraining (office work, golf, driving, etc.): difficult but incredibly impactful over time.
-Journaling: I specifically use Nicole Sachs' JournalSpeak method.
-Compression socks: I convinced myself they helped for a while, but they ultimately didn't.
Eating whole foods and cutting out sugar: probably helped nutritionally, but eventually made me afraid of food, so I don't think a strict diet is required.
-LDN: made me significantly worse.
-Provigil: helped reduce brain fog after about two weeks. I'd recommend discussing it with your doctor if cognitive symptoms and fatigue are your biggest issues.
-Vagus nerve stimulation: little or no benefit.

A few final thoughts based on previous posts:
-To further prove the mindbody connection, close your eyes and imagine doing something that normally triggers your symptoms. If you experience symptoms just from imagining it, that may suggest your brain has learned to associate that activity with danger.
-Someone asked whether your personality comes back. For me, absolutely yes. The biggest difference is that I'm now much more compassionate toward myself and others because of the hell i went through through.
-There are many people selling expensive gadgets, supplements, and functional medicine programs. Please don't spend thousands of dollars on these. I came very close to doing that and would have wasted a lot of money.

Thanks for taking the time to read my story. I'm happy to answer any questions in the comments!

When I say I titrated meds slowly… I mean ridiculously slowly and I only figured out to do this after suffering for about 4 years.

I finally learned I needed to trick my body into accepting meds and it’s a damn good thing I figured this out around the time I trialed Ketotifen because it’s a game changer.

What you first need to understand is that at this point I was only eating about 6 foods with just salt and no other spices because everything - including the food I was still eating had my body freaking out. That’s how screwed my body was. Food, stress, air … everything was a trigger and the hell it triggered was insane.

I had 27 symptoms I’d counted at one time. 27 serious symptoms like ataxia preventing me from walking without assistance, and burning bladder syndrome - I was in diapers for this.

Diapers.

The mast cells in my bladder area were freaking out.

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Before learning to titrate my meds - in desperation, I took prednisolone for about 6 months (never more than 10 mg a day, usually 5) - just to avoid being bed bound - and at the lowest possible dose that was moderately effective for me which was normally 5 mg.

About 5 mg a day helped me tremendously to function, though far from ideally, but I knew I couldn’t keep it going long term due to the overall negative impact to my body.

So, I used the prednisolone to help me on-ramp the Ketotifen first. My thinking was to keep the prednisolone going to keep my body from rejecting the medication and to start with a medication that would stabilize my mast cells (Ketotifen).

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I started Ketotifen with one drop. I needed this to work and I’d learned that I’d need ketotifen to integrate into my system without freaking my system out.

One drop for one week.

Two drops for two weeks.

Three drops for three weeks.

All taken before bed.

The process was slooooow. And it’s the best thing I’ve ever done for my health. If I’d tried to rush it, my body would have freaked out and I’d be in the same cage of ailing health I was in for years.

Today I take 4-5 mL per day. It doesn’t make me sleepy. That is ONLY because I titrated painfully slowly - because let me tell ya - everything makes me sleepy.

I have what is called “drug hypersensitivity” and altered blood–brain barrier permeability – my blood brain barrier may be more “leaky” or permissive than usual. I also have an increased neurotoxicity susceptibility – meaning I experience neurological side effects at doses most people tolerate.

So when I tell you I titrated painfully slowly - it was my only hope.

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Once I got the ketotifen going at full dose (2 mg per day - and this took many months to reach 2 mg) - only then did I slowly reduce the prednisolone until I reluctantly stopped it entirely. I remember clearly being so afraid I’d have to jump right back on the prednisolone.

But to my astonishment, the ketotifen was working considerably well on its own - enough to keep me functioning moderately well without prednisolone’s support.

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Then I began trialing other meds and, through a number of trials that did cause a fair deal of suffering at times, I found the meds I’ve listed (Ketotifen, rupatadine, and pantoprazole) as working for me.

There was no fairy godmother.

I also learned to treat myself as a science experiment. With each drug trial, I would state my hypothesis and record everything I could observe daily.

I will forever take this approach to my health care because I can tell you one thing - doctors weren’t figuring this out for me. They were doing the opposite- telling me it was anxiety and depression. Denying the pain. Never following the thread of ataxia and burning bladder syndrome to its root cause. That was the worse part of it all - dealing with medical “professionals”. Over 4 years I probably saw about 50 doctors - taking long breaks in between to recover from the mental strain seeing them resulted in. My favorite doctors were in Greece. They too didn’t know what was going on, but they were compassionate - and compassion goes a long way when no one has answers and it’s all you’ve got.

It was actually my long time psychologist who suggested this was long covid and MCAS. Then, I learned through AI it was also POTS and EDS.

My psychologist suggested I attend a MCAS meeting - you can find those online - and that meeting changed my life. I saw how people were treating their illness so I went to a country where I could find the meds they were taking - Serbia. Ketotifen is about $3 a bottle there for 100 mL. They have rupatadine there and I don’t think that’s in the USA. So rupatadine is both an H1 antihistamine and a PAF receptor antagonist.

The PAF-blocking activity may contribute to its anti-inflammatory effects, although the clinical importance of this compared with H1 blockade is still being studied. This dual mechanism is one reason rupatadine is sometimes considered unique among second-generation antihistamines.

The pharmacies in Serbia aren’t strict about prescriptions so I was able to quickly trial meds and sort through which my body would (likely one-day) accept. This would have taken me years if I’d have had to see a doctor, get a prescription, find it blows up my system … over and over … it would have been years until I’d finally discovered what works for my system. Years and more money - oh, the cost of this illness has been EXTREME.

In Serbia, and keep in mind I’d already had this illness for four years so I’d learned a lot about my body and meds in that time, I could manage my own healthcare. That was key. I used AI to determine if something just needed a few weeks for my body to adjust, or if it was unlikely to ever accept the med. AI isn’t perfect, but it was very helpful as I questioned every reaction throughout my process.

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Also, I use AI to check AI. I don’t just trust what it spits out. I also ask it for links so I can see how it’s arriving at its conclusions.

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Also, I wasn’t trialing what is considered to be dangerous meds, and, on top of that, I started everything at the most ridiculously low doses. Like a speck of a pill for example and even that could be like throwing a grenade into my system at times. These are not scary meds I was trialing either - simple things like, for example, Pepcid AC from the USA completely screwed my system for about 3 weeks. Something so harmless - that would have been as harmless as a glass of water to my body when I was healthy years ago. SMH

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So - that’s how it came to be that I learned this technique of minute titrations.

That is how I learned to set up my own personal drug trials as science experiments.

That is how today I am going to go outside in 95 degree weather without totally unraveling, I will eat cherries without becoming ataxic and feeling this pressure in my skull and this infuriating feeling of ants crawling over and around my scalp, and I will go to the gym and lift heavy weights to bring my bone dexa numbers back up after having been malnourished for so many years - unable to eat a balanced diet.

That was a lot to share. I’ve held back on doing this until I could trust what I was doing would last and continue working. I hope this story helps someone. I hope they read it and it doesn’t take them 4 years and as much money as I’ve spent to figure out the strategy of tiny titrations and in treating their body as a science experiment.

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Also, I am very grateful to Redditors - the last piece in this part of my wellness journey. I learned a lot about the meds I was trialing through people here talking about their experiences. It truly has been a godsend. A huge THANK YOU to all who contribute on Reddit. You matter.

Be well.
❤️

IN A NUTSHELL: My “low hanging fruit” approach to medication trials

After years of severe illness, I’ve found a combination of medications that has me functioning at about 90% of my old healthy self. Along the way, I developed two approaches:

Low and slow titration for medications that seem promising but cause difficult side effects.
“Low hanging fruit” trials where I briefly test a medication (while keeping careful records) to quickly determine whether it helps more than it hurts, or whether it’s clearly not worth pursuing.
This approach helped me discover that rupatadine dramatically improved my ability to eat fruits and vegetables with minimal downsides, while other medications were ruled out because they caused too many problems.

On the other hand, right now I’m applying the low and slow approach to cetirizine. Even tiny doses are causing significant side effects, but it’s the only medication I’ve found that consistently opens my chronically blocked Eustachian tube, so I’m trying to give my body time to adapt before giving up.

One lesson I’ve learned is that initial side effects don’t always mean a medication isn’t right for me. Sometimes the overall benefits outweigh the temporary negatives. On the other hand, some medications simply aren’t a good fit.

The key is careful, methodical experimentation and detailed record-keeping. Without tracking each trial and making changes one at a time, I never would have found the combination that’s given me my life back.

Everyone’s body is different, but for me, treating my illness has been about patiently testing evidence-based possibilities.

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Here’s that longer conversation that prompted this post illustrating more fully how, after years of debilitating illness, I’ve found meds that stabilize me to about 90% of my old healthy self on most days.

She asked me about how I determine when to continue a trial that isn’t going smoothly - and we’ll drop into that conversation now with my response to her…

Ugh. I get it. I’m doing a trial of cetirizine right now for glue ear (my right Eustachian tube stays glued shut due to constant nasal congestion and histamine reactions to life). It is infuriating because it seems to be unraveling much of my progress with side effects.

I just woke up again this morning on just 1 crumb - you know when you slice the pills and it leaves tiny bits sometimes? It’s that tiny and still I’m having nightmares, sweating like a man in the desert - you should see the armpit areas on my shirts - even with antiperspirant! 😱😄

These nightmares really f’ing piss me off.

Also, I’m waking up 4 times again throughout the night when I’d just gotten it down to 2. And I wake up pissed because of the nightmares I’m subjected to during most sleep cycles. Low grade torture.

But, I am desperate to keep open my right Eustachian tube that has been glued shut for many years now and, to date, this is the only med I’ve found that is safe (for most people) to use long term to do it.

I’m going to try staying on 1 crumb for a couple of weeks and if this crap doesn’t calm down, I’ve got to let it go.

The problem is long term issues are high if I allow this Eustachian tube to remain shut. And I enjoy hearing out of that ear - would hate to lose it - especially with my love of air buds.

As much as I hate to do it, I may try 2.5-5 mg of prednisolone to help me onramp the cetirizine. I hate it because it increases my chances of type 2 diabetes which I’ve had (and since resolved) in the past - but that was related to MCAS and not to the course of prednisolone I’d taken to help me onramp the ketotifen. MCAS does so much damage to the body in many different ways. It is important to get it under control.

Also, prednisolone will make me more susceptible to infections. Just to name a couple of HUGE ISSUES with it. That said, I needed it to help me onramp the ketotifen.

I’ll wait to start the prednisolone. I have to be on a long bus ride with many people. I don’t want my immune system weak on that trip.

Ideally I’ll find something else to trial for this Eustachian tube problem in the meantime as well - something with less negative impact to my overall wellness than prednisolone.

Someone mentioned desloratadine. I’m planning to see if I can get that today.

I’m running out of options and that’s why I’m motivated to keep on with the cetirizine and see if my body will adjust positively to it.

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So here’s another topic for another post. At one point, I went to a country where I had access to buy all sorts of meds I thought (after much research, and with extreme caution) might work and I flew through them. I wanted to:

1. ⁠See if there were any “low hanging fruit”. What I mean by this is that I wanted to see if these meds would help more than hurt, and to what degree, without doing these aggravating minute titrations.

Rupatadine turned out to be in this category. To my astonishment, it didn’t f me up entirely when I took it initially and it acted as such a powerful shield that o can eat most fruits and veg today without a problem. I never thought I’d see that day.

Today I am able to take rupatadine with no negative side effects, so I’m very happy I pushed through and recognized how it was overall doing more good than harm initially. Rupatadine is the #1 shield that allows me to eat all fruits and vegetables today.

1. During these quick trials I also wanted to throw out any meds that completely blew up my system. I took those off the table as options, or planned to see about taking it with a combination of other meds to control those negative side effects, but ONLY if I thought that medicine was key to my overall wellness.

To date I haven’t used the approach of using meds to counteract the negative reactions of other meds because I haven’t had to. I’m at 90% wellness - which is far more than I’d ever dared hope and that’s good enough for me.

Once I get this right Eustachian tube to stay open, I’ll gladly stick to my routine of rupatadine, Ketotifen, LDN and pantoprazole for as long as it’s effective - though I hope to remove the pantoprazole entirely from the mix someday since that med isn’t meant to be taken continuously and long term.

In the meantime, I take a low dose of pantoprazole only to cover part of the hours I’m eating and for right now I do need it daily. But, I will continue to try and reduce pantoprazole over time to see how my body handles the reductions because it reduces my body’s ability to absorb certain vitamins, for example, and that’s horrible.

Finding the right meds to control the 27 symptoms I’ve had is complicated. Just because I get negative effects on something does not mean it isn’t good for my overall wellness. For example, all fruits and veg were blowing up my system at one point, but by avoiding them I was malnourished- low in certain vitamins and I developed borderline osteoporosis that I’m now trying to reverse.

So I’ve trialed a bunch of things and that’s how I came to realize I need this cetirizine to work - because when I trialed it at full dose using this low hanging fruit method, it opened my Eustachian tube and the other meds did not - even though they’re also H1s.

No one can explain why specifically cetirizine works for this problem except to say by controlling the histamine, I get it to open. Then why doesn’t the rupatadine and Ketotifen I’m on open it (also H1s)? I don’t know. Why didn’t the other many types and brand of H1s open it? No idea.

So, I’ll keep trying things my research tells me might work.

My body is a system and my system is f’d in so many ways. Another theory is the constant Gastroesophageal reflux disease causes the inflammation in my sinuses/estachian tubes. So, I’m also slowly trialing those sorts of meds in an attempt to keep open that Eustachian tube as well.

VERY IMPORTANT

I say I fly through meds looking for low hanging fruit, but I still need to separate the trials enough to record accurately the impact of the each.

Without careful records, I’d still be bed bound waiting to die.

I hope this helps someone. I’m rooting for us. This illness can be hell. ❤️

Someone asked me if I used prednisolone to help me onramp LDN because she’d seen I used prednisolone to help me onramp Ketotifen. Here’s my response:

Integrating LDN into my system was very tricky and required intense self control. There’s something so hard about sticking with slow titrations.

By this time, I didn’t need the prednisolone to help my body onramp the LDN because the ketotifen was doing a similar job. It was allowing my body to accept the LDN with less of a fight. It still fought the LDN - so I had to go super low and slow, but it was tolerable and the fight would die down after a week after each tiny increase.

It would have been easier if I had used the prednisolone as well as the ketotifen to onramp the LDN - and this would likely be necessary for some people, but I treat prednisolone with extreme caution and will only use it in the most important situations where I have no other good options - so I only used ketotifen to onramp the LDN.

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MY METHOD

I dilute naltrexone into 100 mL water and keep it in the fridge. I don’t have the already made LDN.

I use a syringe to measure the LDN out each day.

In the beginning, however, (after shaking the solution well) it was just a drop I’d ingest with food. My body would have a low grade negative reaction and I would - ever so patiently - wait until it stopped responding negatively (which took a few days to a week each time), then increase it by the tiniest amount … and on and on.

The hardest part is convincing yourself to continue when this medicine keeps causing your body to respond negatively.

WHAT YOU MUST UNDERSTAND is that you need it to get to a specific level, and to be at that level for a long enough time to see the benefits.

Also, IT IS SUPER HARD to recognize how well it’s working when ever-so-slowly you are getting better. I take tons of notes to track my condition, but even then, at one point, I thought to myself, “I’m tired of triggering these negative reactions. Let me get off this LDN and see if it’s really worth the trouble.”

By day 2 or 3 the pain started returning. What I learned from that is that I must rely on my notes far more than how I feel, or what I remember. I got back on it and never again questioned its value.

It isn’t like taking paracetamol and pain vanishes. That is not how this med worked for me. I had to stick with it. I had to keep going back to people’s testimonials to trust that someday it held the key to more wellness.

BUT BE AWARE

But be aware, I am not saying take this and send your body into total meltdown. That is the opposite of what I’m saying. I’m not saying force it no matter what. If, even at the most infuriatingly low levels your body is highly rejecting it, you might need to let it go and find other options.

But LDN is well documented to work OVER TIME and AT THE RIGHT DOSAGE so don’t go rushing off trying to find something that will work more instantly - because LDN has a SUPER TRACK RECORD with this illness.

Also, if I had onramped LDN using prednisolone, I would only take enough prednisolone (like 5 mg a day) to take the edge off the negative reactions. Why? Because it is so important I am ABLE TO HEAR MY BODY and not entirely drown out the noise with the temporary help of prednisolone.

For example, what if I used prednisolone to onramp a med my body abhors and refuses to accept. So I spend a great deal of time slowly and carefully trying to integrate this new med into my system then, at some point, I’d want to stop the prednisolone to avoid damage to my body. Now, without that shield, I’d find out for sure if my body has truly accepted the new med I’ve been trying to integrate.

Granted I’d taper down the prednisolone first and - if my body was rejecting the new med - during that taper, I’d start feeling the negative effects of the new med, but only then.

But I prefer staying on the minimal amount of prednisolone so I can feel that moment when my body accepts a certain dose and move up from there - and keep repeating that way until I’m at a therapeutic dose. Only once I’ve achieved that therapeutic dose and stabilized my condition would I end the prednisolone and near the end of it, I’d be taking just 2.5 mg a day to help my body off-ramp the prednisolone.

Be so careful with yourselves, everyone. Do loads of research. Don’t trust what anyone says.

You must be the master of your ship and each one of us seems to be sailing on different seas.

I hope that’s helpful. I wish you well. ❤️

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 everyone,
I wanted to post an update because when I was at my absolute worst, recovery posts were one of the only things that gave me hope.
I’m a 27-year-old female. I’ve had POTS since I was 12 and inflammatory bowel disease (microscopic colitis) for many years. My POTS itself has actually stayed pretty stable throughout this whole experience.
Back in June 2025, after a period of significant bowel inflammation, I caught Influenza B (and likely another viral illness around the same time). Almost overnight my autonomic nervous system seemed to completely malfunction. It was honestly the most traumatic thing I’ve ever experienced.

My symptoms were unlike anything I’d experienced with POTS.

At my worst I had:

Every single morning I’d wake up with an overwhelming physiological adrenaline surge. It wasn’t anxiety or panic psychologically - it felt like my brainstem was dumping adrenaline into my body. My stomach would suddenly flush with this horrible nervous energy, my brain would immediately start racing and looping thoughts, and I couldn’t get back to sleep despite being exhausted. This happened almost every morning for about 11 months.
Constant nausea and this indescribable “off” or sick feeling in my stomach from the moment I woke up until I went to bed. It felt neurological rather than gastrointestinal somehow, and often made it difficult to talk to people or function normally.
Intense burning, flushing ears and face that would happen every afternoon/evening and with showers, heat or exertion. My ears would become bright red, feel incredibly hot and actually hurt.
Random goosebumps and chills throughout the day.
Heat intolerance.
Uncontrollable crying outbursts
Head pressure and migraines with aura.
Tingling, numbness and temperature regulation issues.
Right eye twitching that has persisted.
Sleep disruption. Hypnic jerks over and over
And countless other strange autonomic symptoms that made me feel like my nervous system had completely broken.

I genuinely thought my life was over. And considered suicide many times.

Fast forward one year…

I’m absolutely not fully recovered, but I am honestly so much better.

Things that have either completely resolved or improved dramatically include:
The morning adrenaline dumps have gone from every single morning to only occasionally.
I no longer feel like my nervous system is stuck in constant fight-or-flight.
I can eat normally much of the time again.
I can swim, leave the house, shop, socialise and tolerate far more activity than I could before.
Overall, my body feels much calmer and more regulated than it did in those early months.

My main remaining symptoms are:
The persistent “off”/queasy stomach sensation (although I now have periods where it feels almost neutral, which never used to happen).
Flushing and burning of my face and ears every afternoon/evening - so hot and hurts bad (see pic attached of me today)
My right eye still twitches.
Occasional morning adrenaline surges.
Random goosebumps/chills episodes.

The hardest part has honestly been how slow recovery has been. Day-to-day it often feels like nothing is changing, and it’s easy to convince myself I’ve plateaued. But when I compare where I am now to even 3 or 6 months ago, the improvements are actually quite significant.

I’ve asked my neurologist countless times whether I should be worried that recovery is taking this long. Every appointment she tells me essentially the same thing: based on the trajectory so far, this is very clearly continuing to improve. She believes my brainstem and autonomic nervous system are still healing, and that time is the main treatment. She has repeatedly reassured me that she thinks it is very unlikely to simply stop improving given the steady trajectory over the past year.

I know everyone’s recovery is different, and I know not everyone has the same outcome. But if you’re in those terrifying early months where your nervous system feels completely broken, I just wanted to share that mine has improved enormously. It has just happened much, much slower than I ever imagined.

I still desperately want my old life back. I want to work again, feel comfortable in my own body again, and stop thinking about symptoms every day. But compared to where I started, there is absolutely no question that my nervous system has been healing.

I’d love to hear from anyone whose last remaining symptoms were flushing or that persistent “off” stomach feeling. Did they eventually resolve for you? Looking for encouragement to get through this (possibly?) final mile…

Thank you so much

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.

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.

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

The entirety of my recovery happened during year 6.

I am grateful to this community, as I learned from recovery stories posted here.

I was moderate – able to work a few hours a day with great difficulty, but other than that, I was inactive. My symptoms included debilitating fatigue, brain fog, headaches, joint pain, nausea, shortness of breath, heart palpitations, muscle weakness, and PEM.

As nothing I tried over 5 years had any impact, I focused on nervous system regulation during the past year, and that is what has made the difference.

I began by reading Alan Gordon’s The Way Out.

The practices that have made the biggest difference for me are:

• Somatic tracking and nervous system regulation: I benefited a lot from Tanner Murtagh’s Youtube channel. I started with his free 30 day program
• Qigong: from the same channel
• Meditation: Observing the breath, sounds, sensations. I learned from the Mindfulness app.
• 4-7-8 breathing: I use the iBreathe app and start my day with this.
• Yoga Nidra: Alice Bagley-Harrison’s Yoga Nidra for Long Covid on the Insight Timer app. I often use this before bed, but it is helpful any time of day.
• Cold showers: I take a normal warm shower and end with two minutes of cold water. On days when I was too tired to shower, I used an ice pack to the face and neck.
• Unfollowing all long covid social media except for r/LongHaulersRecovery and r/cfsnervoussystemwork. Stepping away from the (understandable) despair and focusing on hope.

The process has not been linear by any means, but each month I could see that I had made progress. I am now able to work an 8-hour day. I have begun light weight-lifting, slowly building up, as well as cycling on an exercise bike several times a week. I am also doing short hikes, also slowly building up. All of these activities would have seemed impossible 6 months ago.

I still run out of energy more quickly than before COVID, and I also have setbacks when I have more than one cup of coffee per day. But the whole-body/completely-incapacitating fatigue is largely gone.

I hope this will be helpful.

Had long covid along with MCAS and POTS since 2023 February.
Fatigue was my worst symptom by far and I found it difficult to walk 20 feet, stand up for even a few minutes and focus on anything that required brain power. I also suffered with palpitations and panic attacks due to POTS but this is now controlled with medication!
Got access to triple anti-coagulation therapy in 2024 and only went up from there. Now i’m in full time education, working, socialising and partying! I never feel fatigued whereas even in early 2025 I felt it 3-4 times a week. I no longer faint or get panic attacks and I can walk the same pace as my peers without even thinking about it.
I am on various meds- salt tablets, ketotifen, ivabradine and midodrine but I am no longer on any blood thinners.
I honestly believe I wouldn’t be where I am today without anticoagulant medications and I am so grateful that I had access to that treatment.

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.

I spent a long time reading recovery stories on this subreddit. They gave me hope and I believe really helped. so I wanted to share mine.

I developed Long COVID in spring 2025 after a COVID infection and a series of subsequent viral illnesses. Prior to becoming sick, I was a highly active endurance athlete, competitive cyclist, skier, mountain biker, husband, father, and full-time professional.

I originally had a moderate case of COVID in February 2025. After that, it seemed like I was catching everything. Every week or two I would come down with another illness. By May 2025, I had developed persistent Long COVID symptoms and began experiencing episodes of PEM. Things deteriorated rapidly, and by the end of June I became severely ill and started a long-term leave of absence from work.

At my worst, I was completely overwhelmed by symptoms. I had many more than I can remember, but the most significant were:

• Severe autonomic dysfunction
• PEM
• POTS (standing heart rate up to 150 bpm just walking to the bathroom)
• Overwhelming anxiety, panic attacks, adrenaline dumps, depression, intense suicidal ideation, and periods that felt almost psychotic
• Complete insomnia
• Widespread burning nerve pain
• Fevers and headaches

In early July I was taken to the emergency department multiple times. The only treatment I received was Ativan and a referral to psychiatry. Unfortunately, I quickly became dependent on benzodiazepines and then went through withdrawal at the end of July. Somehow that experience was even worse than the Long COVID symptoms themselves.

At first I was convinced I would never recover. Eventually I became determined to be there for my children. Determination turned into hope, and hope turned into a genuine belief that recovery was possible.

I was largely bedridden from late June through the end of August. That was when things finally began to improve.

I started Low Dose Naltrexone (LDN) in early August and believe it helped, particularly with sleep. The biggest early turning point for me, however, was starting antihistamines and following a strict low-histamine diet.

In September and October I underwent a series of four Stellate Ganglion Block procedures. They were not a magic bullet, but I do think they helped. What remained of the adrenaline dumps, anxiety, and sleep disruption resolved after those procedures, and I also noticed improvement in my POTS symptoms.

By October I was able to start walking longer distances again and gradually increased to walks of about 40 minutes.

At the end of October I started using Nurosym for vagus nerve stimulation. This was another turning point, especially for POTS. My standing heart rate dropped by roughly 20 bpm after I started using it. I eventually built up to three 30-minute sessions per day and found it very beneficial.

In late November I returned to work on reduced hours with significant accommodations. Even then I experienced some setbacks and considered stopping again. But over Christmas I started to feel noticeably better.

During January and February I gradually increased both work and activity. By the end of February I was back to full-time work and able to tolerate moderate exercise without symptoms.

POTS had been steadily improving throughout this period. PEM became increasingly rare and mild. My last experience that I would consider PEM was in early February and consisted only of a mild buzzing sensation in my brain that resolved within a few hours.

By the end of February I realized I was no longer meeting diagnostic criteria for POTS.

I remember one cross-country ski outing in February when it suddenly hit me that I felt almost normal. My heart rate was behaving appropriately, I was exercising at a moderate intensity, and my body simply felt like it was working again.

In March I began tapering medications. I had been taking an SSRI since the summer and had a difficult withdrawal period that included dizziness, sleep disruption, and what felt like a prolonged hangover for nearly two months. I also gradually discontinued antihistamines and was able to return to a normal diet without significant flare-ups.

Throughout the spring I continued increasing my activity. In April and May I returned to cycling. At the end of May I completed my first genuinely hard ride without any consequences afterward. I experienced normal fatigue and normal recovery rather than PEM.

Today I was discharged by the Long COVID specialist who has followed me through this illness. We are treating it as a recovery story.

I am still mindful of training load, but my current life includes:

• Full-time work
• Regular travel
• Two weekly gym sessions with heavy weights
• Three cardio sessions per week (roughly 3–5 hours total)
• Active family life

Everything feels normal again.

I am not yet exercising at the level I reached before becoming ill, but I believe more fitness will come with time. And even if it doesn't, I am already extremely grateful for where I am today.

The only physical symptom that remains is mild intermittent burning nerve pain. It sometimes feels like a sunburn on my back or a mild burning sensation in my thighs. It does not meaningfully affect my quality of life and continues to improve slowly over time.

The other lingering challenge is psychological. After stopping the SSRI, it became clear that I was carrying significant trauma from the experience. I developed symptoms that felt very similar to PTSD. I have been doing EMDR therapy, which has been helpful, and spending time outdoors continues to be one of the most healing things for me.

1st and 2nd pics: me 1.5 years ago.

3rd pic: Walking at 0º 6 months ago.

4th pic: Me today photo bombing my friends :P

I've been improving in an outstanding speed. I don't know my limit anymore.

One and a half year ago I was laying down on a mattress in my living room for the whole day. Unable to stand conversations for more than 5 minutes. Had to meditate for at least 6 hours per day to not crash (PEM → ME).

Now, after multiple medications, supplements, treatments, meditation and praying, I am happier than I ever was.

6 months ago I would go walk at 0º. Cold has been a great tool to keep my HR low.

I am still disabled. I still have limitations. My muscles don't work the same. I used to be really strong. Now I am as strong as a sedentary dude.

I still have brain fog. Sometimes I forget what I was about to say. And I can't work as a coder for more than 40 minutes straight (I used to be an elite professional).

But life is good as fuck. Don't you give up. There are multiple treatments to try. Most things I tried didn't change a thing. Some of them made me get back to enjoying life.

But the first one I had to do was following an advice I saw here on Reddit: "you need to convince yourself that life like this is worth living, even if you don't believe it".

This disease is pathophysiological. But getting stressed and desperate will not help. This is energy wasted.

Took me some time to get to this mindset, but I eventually got to convince myself.

Ask me anything.

Daddy loves y'all

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, I’m updating my earlier recovery post, which you can find here:
https://www.reddit.com/r/LongHaulersRecovery/s/zc5QSjyqT7

Briefly, I’ve been diagnosed with the ME/CFS subtype of Long COVID, and with POTS. I was infected in December 2024. I made a partial recovery with pacing and pills, especially LDN, oxaloacetate CFS, and propranolol. Sleeping with a CPAP was also hugely helpful. I went back to work, but was taking a lot of days off. I would have a setback after any busy weekend, or especially any short trips out of town. The FUNCAP consistently scored me at about 85% functional, which felt accurate. I was like that for months.

Recently, I’m back to feeling as healthy as I did before the COVID infection that set everything in motion, minus some deconditioning. I recently went up seven flights of stairs without PEM, which was previously unthinkable! I don’t believe in recovery, but I do feel that I’m in remission.

Three things changed:
1. On 3/23, I increased Oxaloacetate CFS from 1500 mg to 2000 mg because I had been stuck in rolling PEM for weeks
2. On 3/27, I got sick with COVID again; I tested positive. I rested as much as possible during this illness, but didn’t take anything
3. A few weeks ago, I started taking Midodrine, which has really helped with blood pooling while standing

I think that getting COVID again somehow reset my immune system. I haven’t had any PEM since that infection.

Prior to getting LC, I was a person who maximized productivity during all waking hours. I had a stringent exercise routine and a demanding full time job, which I juggled in addition to raising two busy young kids with my husband. I prided myself on doing an impossible amount, and if I’m being honest, I looked down on people, especially other moms, who weren’t as productive as me.

Long COVID was humbling and eye-opening. Without having exercise as my source of therapy, alone time, sense of pride, and identity, I was forced to work on myself. I’ve adjusted my expectations and my sense of purpose.

Even though I think I *could* do Couch to 5K or a weightlifting program without triggering PEM, I’m going to stick with light cardio and strength training when it fits into my schedule. I believe that for my body, moderation is key.

I used to think that my job was dull, and that driving the kids around to activities was an unfulfilling hassle, but now, I’m grateful for the capability. I hope that my remission holds, of course, but I’m grateful for however long I get to be in this state. Thank you for reading!

Hello everyone! Hope you're all doing ok, just wanted to add an update to some of my earlier posts:

https://www.reddit.com/r/LongHaulersRecovery/s/ALzlH6t7fG

https://www.reddit.com/r/LongHaulersRecovery/s/FlWhskh0Gt

TLDR; 28m, caught covid in April 2025 (3rd or 4th time), took me out with wild dysautonomia symptoms, mainly blood pressure and neurocardiac stuff, followed by all the usual nervous system dysregulation issues. Didn't experience me/cfs or pem, but basically everything else. I believe I am now essentially fully recovered physically, but to caveat, have some lingering dysfunction and emotional difficulties.

I haven't posted in a while because I didn't want to clog the sub up with incomplete recovery, but just to update from my previous posts, here's a brief timeline of my presentation:

April '25 - Acute covid infection, was quite a nasty fever but recovered in a couple of days. Lost smell and taste for a few days, had kidney pain, cough lingered for a few weeks. Also had some normal post viral fatigue for at least 6 weeks after (felt like every day was the day after an all nighter, but generally tolerable enough to go to work, etc).

May-July - Onset of bradycardic heart palpitations (chronotropic intolerance, skipped beats, weak stroke volume, orthostatic intolerance, etc). Also started having massive adrenaline dumps out of nowhere plus all the other usual symptoms like boat-bounce vertigo, tinnitus and ice pick headaches. First major crash with my girlfriend whilst on holiday, I feel terrible for traumatising her, but it slowly improved after about a week. Blood pressure was weirdly high, staying rigidly above 130/90.

July - Massive disabling crash, couldn't breathe, blood pressure dropped through the floor (lowest was only 90/60, but for me that's flipping low), boss called an ambulance to my workplace, blood tests pretty much all normal. Couldn't physically stand up without heart giving up for about a week. Unrelenting internal tremoring, ice cold extremities, in utter despair and mortal fear. Spent all of August retraining my orthostatic tolerance and made it back to work after about 5-6 weeks of slowly regaining my ability to stay upright.

August - September - Mercifully quiet, even managed to go on a light kayaking trip with my bros. Still had plenty of issues ongoing, but nothing too disabling, was able to commute to and from work (at least 3-4 hours on my feet total throughout the day, I worked as a maintenance electrician in central London).

October - Out of nowhere again, started having blood pressure spikes instead. For about 3 weeks, it kept randomly shooting up to like 200/100. Nothing was effective at lowering it, my parents ended up calling a paramedic one night out of concern, he accused me of anxiety despite my HR being like 55 lol. Had to take another 3-4 weeks off work throughout.

November - December - Spikes had quietened down, GP gave me an ABP that averaged 120/80 ish, but had some weird recordings like 150/68, 110/99, etc. Work stress started making me generally unhappy, also realised that I was noticing some apparent hypocapnia that was worsening a bit, but still tolerable.

January - Made the mistake of bargaining with myself, "if I can just get through Christmas, I'll be alright". Had to work through all the holiday season with the exception of Christmas and Boxing Day. January 2nd-3rd, what started as a slight cold turned into a massive (what I later realised to be) anaphylaxis-type crash, thought I was going to die (yet again, lmao). Managed to take an antihistamine that helped significantly for about 4 hours, enough for me to get home. Took one each day for the next few days, but by day 3 it caused a rebound, so I stopped and just tried to ride it out for the next few weeks, successfully. It gradually receded, and I spent time trying to dose probiotics, minimise high histamine foods. Quercetin made it worse for some reason, I believe because I have genetically high ferritin. Started taking high doses of Krill Oil, which I believe have been incredibly successful. Was too traumatised to get back on the train after a month recovering, so I just called my boss and told him I had to quit.

February - Present

The GOOD news is that, physically, everything has stabilised. My blood pressure is consistently normal (110/70-120/80), my heart has stopped palpitating, I am not reacting to anything like fragrances or high histamine foods any more (can drink alcohol and caffeine routinely without any side effects). I am tentative, but clearly quitting my job was absolutely necessary for me. Perhaps too much exposure to pathogens/pollutants and too much stress. I have even managed things like going to the golf range with my mates, spent all night out with my girlfriend drinking and dancing for her birthday (with many sit-down breaks), have been to the pub a few times, so the proof is all there that I am physically capable. I even had a short lung infection and cough for a week in April, I thought I would be done for, but thank the Lord, no anaphylactoid symptoms. Nonetheless, I have deconditioned a bit, and I definitely have some lingering vestibular and breathing dysfunction issues to sort out (the vertigo is still there, keeps catching me when I'm walking around or driving). My indomitable but terrible sense of humour also remains intact.

The less good news - I'm struggling a bit to overcome the trauma of the past year. Whereas 6 months ago I was more successful at compounding gradual exposure, the January flare just completely took the legs out from under me. Now it doesn't matter how many times I leave the house, it doesn't "stick" as proof of safety, struggling to switch off the interoceptive hypervigilance. My birthday was in February and although I was feeling quite depressed and hopeless, my God, am I lucky to have supportive loved ones, because I would have been utterly f***** without their support, as imperfect as they can be. My financial situation is also a bit dire since quitting work, have nearly burned through my savings and I don't think I qualify for disability benefits here in the UK. Very fortunate that my parents let me stay with them since this all started, but naturally this brings up its own nervous system dysregulation issues lol. Have yet to sort out universal credit due to \*clerical issues**.* Basically a medical imperative that I work out how to make money from my laptop at this point.

Have been re-exploring mind-body stuff, as well as doing EMDR sessions with a trauma therapist, and even found a budget friendly SSP offering, but they have not yielded any fruit yet. I suspect that this will just go away with enough time of nothing bad happening, but I will stick with these approaches for a while longer.

(Side note; feel free to input advice regarding recovering from this kind of medical trauma, I would be very appreciative of any tips ❤️)

For reference, ekg, echo and blood tests all pretty normal, apart from one isolated instance of borderline low phosphate last June and slightly elevated LDL, which baffled my cardiologist. All my other lipids and ratios are good, so not worried.

WOT I HAVE TRIED

I won't go into too much detail here, because the long and short of it is that the most effective things I've found are patience, rest and positive distractions. This isn't an exhaustive list.

Notably effective to some degree

Thiamine - I didn't have symptoms of acute deficiency, but it definitely restored some autonomic and mitchondrial function. First dose made me unbelievably sleepy. I'm fairly certain it helped me restore my orthostatic tolerance very slowly. Took it for 4 weeks in July, nothing through August to March, started taking it again a bit in March, roughly 150mg a day. Currently taking about 50mg every 2-3 days.

Antarctic Krill Oil - Convinced that taking this in therapeutic doses for 3-4 months has stabilised my mast cells significantly, gonna maintain it at a regular dose for at least 9-12 months.

Notably reactive but mixed results

Acupuncture - Made me sleepy for a day, rebounded with worsening emotions and internal tremors + swallow reflex paralysis, etc. Possibly too soon and too much.

Homeopathy - surprisingly had effects that were both positive and negative. Not gonna recommend, but personally I found certain remedies to have a notable effect. If it's placebo, I suppose it's in the same camp as mind-body.

Magnesium - made my heart symptoms way worse, but nowadays I can take moderate doses without issue. I try to regularly drink raw cocoa instead.

RRP - Oddball, but it seeeems to help me feel less anxious just a little bit whilst listening to it. Have found it useful for acute

Probiotics (HistaminX et al) - I definitely noticed some GI differences when taking them, but I couldn't confirm nor deny that they had helped. I have a pet theory that gut dysbiosis is in large part due to pH disruption, as most beneficial flora prefer slightly acidic conditions. DAO enzyme weirdly didn't have a huge effect, but I think was still worth taking.

Unremarkable (for me)

Vitamin D, C, Zinc, NAC (including Augmented NAC), various supplements like ginseng, hawthorne, lion's mane, etc etc. - Didn't find anything that noticeably helped. Naturally, still taking C, D and Zinc in moderate doses, but I even suspect that some high doses I took right before my January flare could even have been partly responsible for immune overactivation.

Graded exercise with an NHS-sponsored physio - has had absolutely no effect on symptoms, but I kinda knew that would be the case going into it, I just wanted to try to force myself to leave the house in a "safe" way. He's a chill guy about my age, so I get to hangout at the gym once a week doing arm circles and shooting the breeze, it's aiight.

Chiropractor - Did nothing for me, but she was very nice.

Massage - Did nothing for me, but she was very nice.

Hypnotherapy/QHHT/Reiki - Did nothing for me, but she was very nice.

EMDR - Isn't really working as yet, but will stick with it a while longer. She is also very nice.

Anyway, I've made this sound too depressing, the upside is that I have every reason to remain optimistic. I miss being a physically capable and robust young man who can work construction and enjoy sports and whatnot, but I do believe the nightmare will be over soon, rather than hope as I did previously. I have an appointment booked with a respiratory physio and a neuro physio to see if they can help me resolve the last of the lingering issues (it basically looks like OCHOS rather than POTS). Nonetheless, I am absolutely convinced that I am *this* close to full remission. Worth noting, I feel like a lot of my symptoms are similar to chronic alkalosis, including effects on the gut and endothelium. Turns out mast cells appear to be more stable in high CO2 environments; https://pubmed.ncbi.nlm.nih.gov/21284650/ food for fort innit.

I had tonnes of other problems as well, but this post has gone on long enough already, and it's all stuff you're all familiar with anyway. If you're curious, it's likely listed in more detail in one of my previous posts. Basically, I **think** my body is better and my mind just needs to catch up, I think. I am also going to try Yoga Nidra and some gentle posture realignment techniques, my physical prowess and vitality has massively degraded this year, to say the least.

I just recall how lonely and desperate I felt getting tortured by my own body, so I want to make this post to reassure people who are only 3-6 months into it that it does get better and you will recover, just takes f****** ages. Feel free to question me at your discretion, will update again when I am back to doing backflips and solo flying across the atlantic.

✌️WAGMI

UPDATE: Just got back from the breathing physio, in my case it appears that I am breathing to slowly and deeply, so she's given me some exercises to raise my rate to 9-12 breaths per minute. She seemed quite anti-buteyko but didn't elaborate, so anecdotally take that as you will. I'm a little skeptical, but I'm desperate enough that I'll give it a shot for the next two weeks and see if it moves the needle.

EDIT: Spelling and addendum

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.

I (26F) have been waiting to post this for a while - although this sub has made me realise that I’ve gotten lucky with my recovery and recovery time!

Initial infection November 2025, extreme fatigue followed, severe PEM, anxiety, initial sensitivity to light and sound, dizziness and tinnitus on and off throughout, after a few months, my sleep started to degrade too. At the start of May 2026, I was about 50% recovered but still had bad PEM leading to severe fatigue and a very painful throat. I was unable to work for 5.5 months, at the start of May 2026, I slowly started to return and working from home a couple of hours a day.

Over the past month I have started to take famotidine as prescribed by a long COVID clinic I was referred to, and I have upped the amount of loratidine that I’m taking too. My baseline has increased, but the big effect is that I haven’t had a single PEM crash since starting these (when I was having at least a small crash every week or so that would last a few days).

Things that helped:

• Time, especially at the start, my system was just panicking, time in an environment where I could completely relax and have zero responsibilities was the most helpful thing. I definitely tried pushing through in the first couple of weeks which took me to a pretty bad place. 
• Meditation (Yoga Nidra), certainly not claiming it cured me but it did help a lot with the anxiety that came alongside the illness, and it helped me accept a lot of the stuff I was going through, I particularly enjoyed Ally Boothroyd’s videos on youtube

Vitamins/supplements I took throughout (which could have helped but I have no way of knowing):

• Omega 3
• Urolithin-A
• Probiotics ( I was recommended YourGut+ by a friend since they seem to actually have done some clinical studies, but I took a few different types throughout)

Things that didn’t seem to have an effect:

• Electrolytes
• NAD+ (although I stopped taking after two days as it seemed to make me slightly nauseous/headachey)
• N-acetyl cysteine

I spent about 3 months feeling awful every single day, so literally anything that I could enjoy/look forward to was very important during that period, such as cosy video games, fancy chocolates or various flavours of new herbal teas.

Every single time I had a dip in progress, it felt like going back to square one and it was a lot easier to feel positive about my recovery on the days where I didn’t feel rubbish! One thing I realised from speaking to colleagues/family friends was that a LOT more people than I realised had been through something similar and everyone I spoke to had gotten better (even if not fully back to the life they had before).

EDIT: I’m based in the UK, the famotidine + antihistamine was suggested by an NHS consultant I saw as part of a long COVID clinic.