r/LongCovid

Just got this RX from my LC provider. Supposed to help with PEM and my ME/CFS symptoms. Starting at 30mg twice a day.

Anyone else on this or have tried it?

Any positive stories?

When the fatigue had you almost bed bound? But eventually you either recovered or improved considerably.

Only positive stories please, as I find some of the negative ones triggering.

This isn't my first rodeo ride with long covid. I originally developed LC back in 2020 & managed to recover 90% around the 11 months mark.

This is my first major relapse in 5 years, the difference this time is, the fatigue feels considerably worse than 2020.

I manage to walk around my apartment, if I pace myself.. However going outdoors/driving or climbing stairs is proving difficult & causes a flare up of my symptoms.

I have head pressure & tinnitus too, and possibly POTS.

The only thing that gives me hope is, that I recovered from this illness once already.

My medication/supplements stack is:

1. LDN (Low Dose)
2. Longvida curcumin (best for absorption & neuroimflamation)
3. Omega 3 IFOS certified (best for absorption & neuroimflamation)
4. Magnesium Glycinate
5. C0Q10
6. Nicotine patches (not used these yet)
7. Vitamin D K2

I think this plays a bigger role than we realize or want to admit. Especially those of us still trying to improve our condition.

Does anyone have personal experience with this or know the scientific basis behind it? I would also be curious if anyone contributes not being on there phone as an asset in there recovery?

Hi from the Nordic countries! Is anyone elses main symptom frequent viral infections? Mine is that + the insane fatigue they result in.

Some background:

Had Covid for the first time February 2022. It took 3 weeks before I could go back to work (as a music school teacher). I started having a viral cold once a month since then. (Before that I was sick 2-8 times a year). That felt like a lot, and I was quite embarrassed having to be so much away from work. Other than that I was pretty ok. But that was nothing in comparison to what was about to happen...

I had Covid again in June 2024. It was worse, the cough was so bad I thought my heart will stop, toenails were bluish even though my oxygen level was ok etc. From that infection on I've been getting a cold TWiCE every month and I'm also insanely fatigued. Not a single fully normal day since then. A couple of bacterial and fungal infections but the viruses have destroyed my life. Or large parts of it.

I've been well enough to continue doing about 50% of the workload I used to, which is just enough to keep up with rent and car. Other than that I just rest and I've needed to do so many adjustments to just get the work done. Taught online (we are officially not allowed to), worked while sick, compensated lost lessons later, hired collegues to keep my lessons out of my own pocket, and been officially on sick leave but I try to minimise that (fearing the consequences). Other than that I mainly recover, sitting or lying in my home.

Social life is minimal (mostly people visiting), my beloved long term partner left me (and there went the dreams about a home and family, I'm already 42F), relatives think I make this up and just go crazy mode about this all (I've started lying that I'm just busy doing fantastic stuff like gym and volunteering to skip the drama...). Absolutely no excercise, if I bike to work (2.5 km) it takes me hours to be able to even it sit straight, let alone stand and teach.

I was studied in the hospital, I had too low CD8 and NK cells (so viral defence is a problem) and low vitamin D and low ferritin. So far everything else normal. I also don't sleep too well but I've been like that for years.

..So just curious, is anyone else getting sick this often? And is anyone else trying survive as a teacher with this condition?

I’ve been in the worst flare up I’ve had for a while. Racing pounding heart, anxiety through the roof, major dizziness, the top of my scalp hurts to the touch, my vision is fucked with visual snow, shakiness, my limbs feel tingly the list goes on and on.. idk what I’ve done to cause a flare up.. I’ve been drinking electrolytes, getting enough sleep, could this be stress? Please let me know I’m not alone. This one is really getting to me.

I’ve been trying to be responsible and get things checked out, but I’m starting to wonder whether all these appointments, calls, urgent care visits and attempts to get labs ordered are actually helping — or whether I’m exhausting myself when what I really need is rest and time.
I saw my cardiologist, who basically told me that my previous cardiac testing was reassuring, to hydrate, give my body time to recover, stop constantly watching my Apple Watch, and reassess in about a month if the heart-rate issue continues.
I also tried urgent care and, after a huge amount of time and energy, I really didn’t get much help.
My first appointment with a Long COVID clinic isn’t until October, so I’m trying to get some answers and make sure I’m doing the right things in the meantime.
I’m seeing my primary care doctor next and am considering asking for basic labs to rule out other causes of the fatigue/HR symptoms, plus Sjögren’s markers because the dry mouth and eyes have become pretty significant.
For those further along in recovery:
Were all the appointments and testing actually worthwhile?
Are there any specific labs that were genuinely useful or that you wish you had asked for earlier?
Did your doctors find anything actionable, or did everything come back normal and you ultimately just need time, hydration and pacing?
And how did you balance getting appropriately evaluated with not using all of your limited energy chasing medical appointments?
I don’t want to ignore something important, but I’m realizing that trying to get answers is taking a lot of energy that I could be using to recover.

I seem to be getting worse every day. I'm almost bedridden now. I have all the symptoms you can think of when it comes to long Covid and now the anxiety is through the roof. At this point I don't know what to do. I've tried everything and been seen by every specialist you can think of with no improvements whatsoever. I'm feeling this could be my last post and I'm nearly passing out now just sitting here. I hope they find a cure for this crap for the remaining people dealing with this crap.

Hi all!

I hope I can get some answers or, well, thoughts or experiences because I’m getting so hopeless. However, I don’t need the “you’ll never get better,” “it’ll only get worse,” or anything in that direction. I’m just trying to put the pieces together. Whenever I try to search online, I either barely find answers or get completely overwhelmed.

I had my first two COVID infections around 5–6 years ago. I’m not completely sure when the fatigue first started, but I think it was around then, although I really started feeling it more clearly around 3-3.5 years ago. Then, about 3-3.5 years ago, I had my third COVID infection, and after that I never really felt like I fully recovered or went back to how I was before. Since that infection, I’ve gradually gotten worse over the past three years. It hasn’t been a sudden decline, it’s been slow, and I’ve become more and more limited. I was also apparently positive for EBV at some point, although I’m not sure when that infection happened or whether it was around the same time as everything else.

This was also during a very tough and traumatic period in my life. At first I thought it was burnout because of everything that had happened, and both my psychologist and doctor thought that was what was going on too. For 1–2 years I was basically told it was burnout.

I started doubting myself because it felt like nobody believed me, but deep down I knew something was wrong. I’ve had burnout before, and I was studying psychology at the time, so I kept thinking, “Something about this doesn’t feel like burnout.” I went to the internist (after begging my doctor) and within 5 minutes he was like, “This is chronic fatigue.” We’re now at the point where he thinks it could be my parathyroid or Long COVID.

I had Long COVID in the back of my mind for a while, and eventually I came across ME/CFS and specifically PEM. The more I read about PEM, the more familiar it sounded. I’m obviously not trying to diagnose myself, but the pattern of my symptoms has made me seriously wonder about ME/CFS or Long COVID.

One of the biggest things I experience is what I think may be PEM. I get what I call crashes that can be triggered by both physical activity and emotional/mental stress. Sometimes I can do something that doesn’t seem particularly difficult at the time, but then I feel significantly worse later or especially over the following days. Sometimes it doesn’t trigger anything at all.

The crashes are especially confusing to me because they don’t necessarily happen immediately. I can sometimes do something and only realize later, or the next day, how much it has affected me. Physical activity, mental activity and emotional stress can all make me worse, but mostly physical activity.

Does this sound familiar to anyone or any thoughts?

Thank you to anyone who took the time to read this.

I’m barely hanging on. I’ve tried everything and I have a 19 month old. It started 4 months after I had him from covid while pregnant. I just want my life back I cry every day all day. I’m really losing hope.

hello

Please help me how can i create a false negative result on a helicobacter pylori breath test.

Explanation: I want to get xolair for long covid, mcas, but the doc only gives it to me, if the h.pylori test is negative. unfortunately it came back positive for me, but i know that it's not the cause because my pre-covid and post-covid MCAS are night and day different. i don't want a 2 week course of antibiotics because my gut microbiome is already bad.

so please give me any advice how can i create a false negative

People who coming here to write the "talk to your doctor" and "you shouldnt do this" comments please dont bother, thank you

Been dealing with lc for a year now and have been researching treatments. Currently exploring or already using some of these and curious if anyone has experience with them:

Urolithin A, Hydroxychloroquine (HCQ), Icariin, Serrapeptase, SAMe, Larazotide, Idebenone, Methylene Blue, Full spectrum CBD/CBG (without thc) oil, Ivermectin.

Particularly interested in whether any of these made a noticeable difference for MCAS symptoms, post-exertional malaise, brain fog, tinnitus or exercise intolerance. I’m already on a long list of supps, including LDN, ketoifen, crom sodium, idebenone, methylfolate and lots more.

Urolithin A: specifically interested in this one for ACE2 receptor upregulation and mitophagy. LC appears to downregulate ACE2 via spike protein binding which leads to angiotensin II accumulation, vascular inflammation and mast cell activation. Urolithin A reportedly upregulates ACE2 expression and clears damaged mitochondria. Has anyone noticed improvement in vascular symptoms, exercise tolerance or mast cell reactivity from it?

Did anything work, make things worse, or surprise you? Any dosing insights or things to watch out for would also be appreciated.

I’ve been trying to describe this feeling and it’s so hard to put into words. It’s not really normal tiredness or sleepiness. It’s like I have absolutely no energy in my body, and at the same time everything around me feels weirdly distant, almost nostalgic or dreamlike.
It’s like my brain is completely drained and the world feels different because of it. I can just lie there and feel this strange emotional/physical sensation that I can’t really explain.
It tends to happen when my fatigue is really bad, especially later in the day. Yesterday it was really intense at night, and today I’m getting the same feeling but not as badly yet.
Does anyone with chronic fatigue, POTS/dysautonomia, ME/CFS, or anything similar know exactly what I mean? It feels so unique and I’ve never really been able to describe it properly.

I'm pretty sure I've always had some form of CFS (undiagnosed), and CPTSD (diagnosed) from childhood, and I've always been super flexible and throwing my back out a few times a year which makes me think I have a hypermobile disorder on top of being able to do most all of the criteria for hEDS but not being diagnosed, doctors also thought I had hirschsprungs as a child but I never got definitive answers because it was too expensive for my parents, saying these as they could be reasons but I doubt it

Since late 2019/early 2020 I started having extreme issues with energy, I've always been extremely low energy but this was like multiple days of recovery and sleeping a lot more, and my workouts and constant trail hikes pretty much stopped. I got pretty sick around then but never tested positive for COVID.

Since then, I got really sick and had to quit working. I've been diagnosed with Inappropriate Sinus Tachycardia, borderline on Postural Orthostatic Tachycardia Syndrome, Small Fiber Neuropathy, Fibromyalgia, Eosinophilic Esophagitis, had my Gallbladder removed, am now pre-diabetic after the gallbladder but was completely fine (because issues mirrored diabetes) on prior testing. My unexplained symptoms are

Tightness in the chest/feeling like I am struggling to breathe. Forgetting things constantly, names of things, mixing up my words when I speak or swapping letters around, and having to pantomime 'the cold box' for fridge, for instance. Consistent conjunctivitis that doesn't appear to be infectious at all and reoccurs with vision issues and headaches every few months. Intense chest pain and pain under my left arm. Frequent 'urge to pee' that lasts for a few days then goes away. Getting really tired and falling asleep after eating sometimes (from before I developed pre-diabetes, I've switched most of my diet to whole wheat instead of white bread, brown rice instead of white rice, no sugary drinks, and switched from junk food to protein bars that are listed as low sugar, eating a lot more vegetables and trying to get walks in) and I feel like it takes so much effort to keep my head up straight so I'm always tilted now.

I often walk with a cane now, I used to work out extensively and had pretty decent PRs, like 295 bench, 465 deadlift. I would walk 35k steps a day and now I feel so tired just doing the dishes that I need a stool to sit on. They accused me of having sleep apnea which I have always snored and I was barely hitting requirements. My vitamin D is consistently extremely low but even on a CPAP that I fucking hate and on Vitamin D 50,000 every week until elevated levels I'm still extremely tired.

I have a cardiologist, a neurologist, a rheumatologist I hate (she asked me to stand up, looked at my legs and said I don't have hEDS even with hitting every other criteria but family members and having a fused spine, then poked me a few times and asked if it hurt and said I have Fibromyalgia, all within my first 30m visit then she prescribed me muscle relaxers after hearing I had suspected sleep apnea! I had seen a person to rule out asthma (fun fact, the ER gave me an asthma when I complained of breathing issues at 190bpm heart rate and told me to just use it when I felt like I couldn't breathe) I've done stress tests, ekgs, tilt tables, all of it.

Nobody knows why this all started in my early-nid 20s, what the reason is, and they act like there is no cure. I quit alcohol, caffeine, tobacco, marijuana, all of it years ago when this started and I have nothing to say "this is the issue". I'm fucking crying some days from tthe pain and using cbd powder and refusing the pain meds because they cause other issues, my heart is always doing that "falling down a rollercoaster" thing, I fuckig. Hate it I just want answers but nobody gives them. My neuro said she can refer me to a dysautonomic clinic but it's hundreds of miles away and we can't afford it because I haven't been able to work and I thought I was smart taking a year off for my medical issues then once it was figured out applying for disability but my dad is saying I won't have the work credits for it but I've been working since I was 14yrs old so I have to get a job when I can't even cook my self food some days and it's fuckign too much sometimes.

They did also diagnose me with panic disorder and general anxiety disorder and depression, and I had agoraphobia for a bit, all after I started getting sick. I also have these extreme adrenaline dumps now I guess they're called? Where like if I think I'll get into a confrontation my heart gets super quick and I feel sick and get really weak. This never happened before but now even a simple argument leaves me out of it for a few days

One doctor said it might be long COVID, so I'm asking for this sounds like anyone else's experience.

Oh and my mouth is dry as hell all the time and my eyes are always dry too lately like I drink a lot of liquids and still feel super dry

I am experiencing a significant relapse.

The first one in 5 years. I originally developed LC back in 2020, but I recovered to 95% over a period of 12 months.

This relapse happened 11 weeks ago.. I foolishly triggered a secondary relapse at week 6 by cleaning my apartment.

I have been pacing very carefully, resting loads, avoiding anything that would cause a relapse. Have been house bound for weeks.

I'm avoiding MCAS triggers by cleaning up my diet & taking supplements.

However I feel worse? I have developed a touch of Shortness of breath, over the last few days.

Why do I feel worse even though I am taking strict measures to rest and minimise relapses.

I hope someone can help me.. I have neurological symptoms such as SFN, POTS, Raynauds including almost no saliva. I have had multiple blood panels done and they’re all negative including SSA ANA SSB. My lip biopsy and ultra sound were both negative for sjogrens.

I have no inflammatory markers at all and the only abnormal finding I have found is low neutrophils and low wbc which is not common in seronegative sjogrens. I also took an early sjogrens panel with one positive marker and have had 3 rheums tell me that the test is not accurate. Where should I even go from here ? Is this even sjogrens at this point ?

Over the last two weeks, the pressure in my head & the ringing in my ears (tinnitus) seemed to have eased off & pretty much cleared up.

However yesterday the tinnitus came back & so did the head pressure.

I did a little activity yesterday, very minor.. nothing accessive. Just a 2 minutes walk to my car & back. I stayed within the envelope of what I am currently capable of.

Is this something other people have experienced.. Symptoms come back for no apparent reason?

I’m in a bit of dilemma and really don’t know what to do. Both decisions are right and wrong at the same time but I figured getting some advice could help.

I am finally back on campus after 3 years of medical break due to LC. I made great improvements last year, all thanks to effective pacing. I was able to complete the majority of my degree before I went on break and came back this year to complete the remaining two units before the max duration to complete the entire degree ends at the end of this year.

By some miracle I passed my second last unit last semester, with accommodations in place. I completely underestimated how hard it would be for me, both physically and cognitively. I broke my number one rule: pace and avoid crashing. I couldn’t do that and kept crashing until I landed in a bigger crash in the middle of the semester and caught the flu. I managed to catch up and do the bare minimum and passed.

Because I couldn’t properly recover from last semester I’ve been in a low grade crash ever since and have missed 4 weeks of school. It's not severe but ive been napping almost all day and feel like crap. I can do things here and there but can’t do the 5-6 hour day on campus + 12hours study that this unit requires each week. What’s even more complicated this unit is that it’s mostly group work so it’s not like I can work at my own pace without it negatively affecting the rest of the group.

The university is trying its best to accomodate me but if I can’t attend or do the work, then how can they help?

I have two options to choose from:

Wait to get a little better and push through the unit and finally finish my degree (it’s my 8th year, I’ve had enough!!), but risk declining and crashing even further (and I will). I am beyond desperate to finish this degree and maybe my spite will be enough to get me by

or

Apply for a course duration extension and do the unit again next year, leaving me time to radically rest but having to drag this out for another year and potentially making a decision from fear and anxiety. Im also dealing with anxiety and gut issues that have flaired up along with LC. It would be easier to make this decision if I was only dealing with the LC and was fully incapacitated bedbound/housebound but I’m not. I consider this option a ‘preventative tool' for LC but an 'avoidant' one from an anxiety stand point (I hope I'm making sense). I am the kind of person that gives my all before admitting defeat but I've had moments where I've allowed my anxiety to take over

I feel like I’d be doing a disservice to myself for deferring, (I deserve to finally finish) but I also know that long term pacing has increased my baseline and it’s important to respect my health boundaries, even if I think ‘I can make it’ (at what cost though?)

I’m going to have to apply for the course duration and I don’t even know if they’ll even accept it (I don’t know what I’ll do if they reject it) so I’m not sure why I’m even posting. It’s clear that I can’t really make a wise decision without knowing the outcome but I figured I’d get some advice anyway

Thank you 🙏

This may be a long shot, but does anyone have a PCP they trust in LA for Long Covid or ME/CFS? I have Blue Shield but honestly any reccs is appreciated!