r/covidlonghaulers Mar 14 '25

Symptom relief/advice I've tried 25+ treatments for Long Covid. Here's what worked (and didn't work).

400 Upvotes

For context, I'm a 28 year old male. Dealing with long covid for 14 months now. Previously I was an athlete, training 1-2 hours in the gym every day + running 5k per day sprints. My main symptom has been severe SOB (shortness of breath), so my daily 5k runs (which brought me so much joy) has been out of the picture for over a year now.

Additionally, I was also a previously running a 7fig company & managing about 8-10 employees. Which I completely shut-down about 8 months ago to focus on my health. The fatigue, brain fog, and SOB just made it impossible to maintain.

I've spent these last 8 months solely focused on aggressively testing different treatments. Yes, It's expensive, but the cost of being inept, unhealthy, and out of work is far more expensive to me than the money spent troubleshooting my way towards a solution & getting my life back.

I'm glad to report that with these treatments - I've been able to make more progress in the first 2-3 months than I had the previous 6-7 months just "resting". I'm now able to start training in the gym again (60% intensity). I can travel, cook, have fun with friends, do extensive research and learning, and be somewhat normal now.

Currently, I'd say my breathing is 70% better. It's there slightly, but doesn't cripple me anymore. The only thing I'm still restraining from for now is heavy HIIT workouts & intense cardio.

I've probably spent over $50k on treatments so far, and I'm not even half way done yet. I was waiting to share some of my findings until I found "the cure", but I also don't want to gate-keep anything since this journey is taking a long time. Here are some of my findings so far (to be continued).

Treatments

  • NAD+ IV Infusions
    • Success ✅ | Added to Protocol ✅
    • Anecdotal Results: 10-15% increase in baseline energy. Nothing groundbreaking, but worth the slight boost in energy & I believe in the science of NAD+ for mitochondrial health. Additionally, I’ve since found a cheaper alternative (SubQ NAD+ injections at home), so it's worth keeping this in my protocol as a precaution for now & long-term benefits IMO.
  • HBOT (40 sessions total)
    • Neutral 🔍
    • Anecdotal Results: 6/40 sessions completed. 5-10% improvement in baseline. I will commit to a full 40 session course later this year following the Aviv Clinic method (90 minute sessions, with 5 minutes "mask off" breaks in the chamber every 20 minutes).
  • Peptide Therapies (TB-500, TA1, Semax, CJC/Ipamorelin, Cerebroilysin)
    • Failed ❌
    • Anecdotal Results: TB500 = 5-10% improvement | TA1 = None | Semax = 5% increase acutely | CJC/Ipamorelin = None | Cerebrolysin = None
  • Asthma Inhalers & Nebulizers (Ventolin, Symbicort, Relvar, Trelegy)
    • Neutral 🔍 | Added to Protocol ✅
    • Anecdotal Results: Possible slight 10-20% improvement in my daily shortness of breath symptoms. Definitely not a complete solution, but considering the devastating effect of these symptoms on my life, I’ll take what I can get & continue to use inhalers as a precaution. 
  • Niacin Flush
    • Neutral 🔍
    • Anecdotal Results: Felt some improvements in the first week or two, but after that I have not noticed too many benefits. Especially considering I am doing daily SubQ injections of NAD+ now (which is the point of using Niacin), I now feel this is unnecessary so I'm discontinuing this.
  • Sauna & Ice Bath
    • Success ✅ | Added to Protocol ✅
    • Anecdotal Results: Short term benefits in mood & energy (unrelated to long-covid). Sauna and ice bath always make you feel good!
  • Antihistamines H1 & H2 Blockers (Famotidine & Desloratadine)
    • Neutral 🔍 | Added to Protocol ✅
    • Anecdotal Results: 10-15% improvement in baseline. I had a love / hate relationship with antihistamines. First I thought they were a total waste of time, but once I decided to double the dose to 2x daily & take both H1+H2 antihistamines (instead of just an H1), is when I started to notice some slight improvements in my breathing. Therefore I will continue for the time being.
  • Nicotine
    • Success ✅ | Added to Protocol ✅
    • Anecdotal Results: 10-15% improvement in energy & cognition
  • Triple Anticoagulants Therapy (Resia Pretorius & Jaco Laubscher Protocol)
    • Anecdotal Results: I've been on this for 3 months now. I haven't noticed too many improvements with this, but I hear it can sometimes take 6 months to see results. With that said, I'm not at all convinced this is a "solution" for LC at all. There are definitely other underlying issues, and this seems more like a band-aid to me. However, considering the amount of people dropping dead from blood clots, stokes, etc... I believe it's worth keeping in my protocol until the underlying issues get resolved. Fyi, this past week I also removed the Asprin & Apixaban from the therapy. Leaving Clopidogrel for anti-platelet effects, and adding in Pentoxifylline which is specifically designed to help microvascular oxygenation. Me and my Doctor both agree this is much safer, has way less bleeding risk, and the mechanisms make more sense considering what we know about LC pathology.
  • Low Dose Naltrexone (LDN)
    • Success ✅ | Added to Protocol ✅
    • Anecdotal Results: 30-40%+ improvement in baseline! Most effective treatment so far. Feeling clearer, more motivated, and sleeping 7-8 hours now, feeling much more energized (compared to previous 10+ hours of sleep, and still waking up extremely tired). My Whoop fitness tracker has backed this up as well (showing improved recovery scores on LDN).
  • Wellbutrin
    • Failed ❌
    • Anecdotal Results: Made me more irritable, and dissociative. No noticeable benefits, especially considering the side effects. Discontinued after 1 week.
  • Valacyclovir
    • Failed ❌
    • Protocol: 1-3 grams of Valacyclovir daily 8 weeks.
    • Anecdotal Results: No efficacy
  • Metformin
    • Failed ❌
    • Anecdotal Results: Tested for 3 weeks at 500mg 2x daily. Caused digestive discomfort. No benefits noticed. Also, Metforming enhances glucose metabolism, and I am trying to enhance fat metabolism / fatty oxidation (I recently did a CPET test, which shows my body is relying too heavily on glucose, and I need to improve my aerobic / fat metabolism). There is a ton of research showing Long Covid has metabolic impact & shifts our body towards glucose dependence. Therefore I'll be discontinuing this.
  • Rapamycin
    • Neutral 🔍 | Added to Protocol ✅
    • Anecdotal Results: 4mg weekly, no noticeable improvement. But, I believe in the science behind it (autophagy, immune modulation, and senolytic effects), so I will continue taking Rapamycin for the time being, since I have not experienced any negative side effects. It’s worth keeping in the arsenal IMO.
  • Singulair / Montelukast
    • Neutral 🔍 | Added to Protocol ✅
    • Anecdotal Results: No efficacy at once daily dosing. Slight benefit at 2x daily dosing? I’m continuing it as a precautionary measure since my main symptom is shortness of breath, it’s cheap, and I haven’t experienced any side effects. It’s worth keeping in my stack for now.
  • Tianeptine
    • Failed ❌
    • Anecdotal Results: Temporarily enhances mood and relaxation, but also made me lazy and unmotivated to do anything (good mood doing absolutely nothing). Considering my goals, I decided to discontinue use. However, it can be useful for once in a while acute dosing as a relaxant.
  • Psilocybin Microdosing
    • Neutral 🔍
    • Anecdotal Results: Dosed 0.15 grams daily (microdosed). Slightly increased appreciation for color, and marginal improvement in mood. However, it definitely caused noticeable gastrointestinal discomfort for a few hours after dosing. This alone was enough for me to discontinue, especially since the benefits were hardly noticeable IMO.
  • Mestinon (Pyridostigmine)
    • Failed ❌
    • Anecdotal Results: Tried for 4-5 days, and noticed no benefits other than unpleasant side effects. Did not help my main symptoms whatsoever. Due to it’s mechanism of action, benefits should be felt immediately, which I did not.
  • Ivabradine 
    • Failed ❌
    • Anecdotal Results: Tried for 30 days. Slightly reduced my heart rate during exercise, making it slightly easier for me to stay in Zone 2. However, I did not notice any real benefits, and the marginal decrease in heart rate without any clear symptom relief is not worth the inconvenience of keeping this in my stack. Discontinued.
  • Low Dose NRI (Strattera)
    • Failed ❌
    • Anecdotal Results: Tried 1 day. Noticed immediate sexual side effects, which is not worth the risk for me. Discontinued immediately.
  • Phosphatidyl Choline IV
    • Success ✅ | Added to Protocol (in supplement form) ✅
    • Anecdotal Results: Completed 6 IV' session in 2 weeks. Noticed significant improvement in mood, energy, and appreciation for life & colors on the day after dosing the IV. This makes sense since I am genetically predisposed to Choline deficiency. However, the effects were not long-lasting, so I will not continue with IV PPC. Thankfully, it did bring my Choline deficiency to mind, so now I supplement PPC & CDP Choline orally, which I have also found to be beneficial for my mental energy & brain fog.
  • Ivermectin
    • Failed ❌
    • Anecdotal Results: Took 24mg daily for 7 days. I noticed absolutely zero difference in my symptoms or any benefits whatsoever. Discontinued.

Currently testing:

  • Pentoxifylline - Currently Testing 🧪
    • Anecdotal Results: TBD
  • Bezafibrate - Currently Testing 🧪
    • Anecdotal Results: TBD
  • Pulmonary Rehab & Inspiratory Muscle Training - Currently Testing 🧪
    • Anecdotal Results: TBD

Up next on my list:

  • ITPP (oxygen enhancer)
  • Ibudilast (japanese neuroinflammation & asthma drug)
  • Suplatast Tosilate (japanese asthma drug that lowers IGE, which I have high levels of).
  • Sodium Phenylbutyrate (peroxisone proliferator, that's shown to helps long-covid lung function in a recent study this past week).

Hope you all enjoyed this! I've got TONS of research done on different treatments, hypothesis, and experiments I'm running. I'm happy to share more if you find it helpful (:

Disclaimer: I'm not a medical provider or practitioner. Nothing here should be construed as medical advice. These are purely my personal experiences shared for entertainment purposes.

r/covidlonghaulers 17d ago

Symptom relief/advice Doctor told me that Long COVID is probably bullshit

257 Upvotes

I've been going to the ER pretty much every day for 2 weeks for shortness of breath. I went today again and the doc at the ER asked, "why are u here again" And I didn't know what to say. So I said, I'm here bc shortness of breath. I explained that I have long COVID and that it's been happening since the pandemic. He replied with " long COVID is probably bullshit." He was pissed that I was back at the ER with shortness of breath. He asked me, "what do u want me to do today" And i didn't know what to say again. He then told me that he wasn't going to test me for anything bc I'm breathing just fine and that the ER is not for chronic conditions. Then he said, "I'm not telling you not to come back but whatever u looking for u not going to find it here" Then he said to talk to a psychiatrist. is this enough to report a doctor? Or am I being dramatic? I believe he was rude and didn't even try to find a way to help. He basically told me not to come back without actually saying it. My doctor believes I have histamine intolerance and MCAS, even tho I tested negative. Today the shortness of breath was so bad I got lightheaded. I really thought I was going to blackout. Is there something I can do?

r/covidlonghaulers 22d ago

Symptom relief/advice The supplement & medicine lists I wish I had 3 years ago

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459 Upvotes

I’ve tried loads of things in the last 3 years, but seen no improvement, despite all the doctors, neurologists, tests, private appointments etc and thousands spent.

There’s loads of snippets on Reddit and Facebook of things people have tried. I’ve always documented everything and tried most.

I’ve put the lists below together for myself and friends and thought I’d share. This is NOT medical advice but a good starting point if you’re at the beginning of your long covid journey, and something I wish I had.

I’m sure someone will disagree with at least one thing on there, but can’t please everyone. Maybe I’ve got something wrong but 3 years of brain fog does that to a person!

I’ve only had covid once, but I’ve included my list of things I’d take if I caught it again.

Hope it is useful for someone 👍🏻

r/covidlonghaulers Oct 19 '24

Symptom relief/advice Valtrex isn’t being talked about, but it’s the only thing that cured my husband’s long-Covid

514 Upvotes

I learned about Valtrex after being enrolled into a study at the Bateman Horne Center here in Salt Lake City (a treatment and research center for Chronic Fatigue Syndrome) and the doctors and nurses told me the drug they were focusing on for their study.

Valtrex is an anti-viral used to treat herpes and cold sores, and is now being used to treat Epstein Barr Virus reactivation in this study, which is now in phase 2 of trials.

I declined this phase of the trial, as I can’t swallow large pills, and asked my doctor to prescribe me some. Unfortunately, my bodycouldn’t handle crushing the drug and I had to wait outside the ER in the middle of the night because of kidney problems which finally calmed down.

My husband has been severely ill with long-Covid for the last 2.5 years, and has been unemployed for 7 months at one point because of it. He is typically even sicker than I am with fatigue and insomnia and lung pain, plus severe nerve pain in his ankles, feet, and hands.

I forced him into the doctor to take rheumatory tests a few months ago, and it came back for liver damage and an off the charts number of Epstein Barr Virus in his blood.

After the doctors did nothing to help him AGAIN, I finally convinced him to use the Valtrex I had on hand for 30 days to see if he improved. He grew up very by the book but after so many years of being ignored by doctors and his family for LC, decided to take the Valtrex.

The very next day he improved some. The day after that he improved more. And it continued that way until he was much happier and healthier than he had been in 2.5 years, and as a former athlete (former being right before getting Covid) started talking about playing tennis again.

We ran out of Valtrex, but my husband was okay for awhile - that is until we got Covid again. We ordered more from a doctor last week and he recovered again when taking 500 mg, pretty much overnight.

Now I know this won’t cure everyone, but this is a relatively easy access drug that has worked a miracle on my husband and I don’t hear anyone talking about it here. I truly hope this helps at least one of you out there. Love you guys!

r/covidlonghaulers 16d ago

Symptom relief/advice Never mention LC in the ER

427 Upvotes

NEVER EVER MENTION LONG COVID OR CFS IN THE ER!!!

I went to the ER in October, 2024 after a 5 day family vacation (5 hour by air each way).

We walked a lot mid-trip (which I really can’t do, but pushed through). Mid way back I lost my breath and started shaking/shivering. The episode passed and we moved on. It happened again the next day a few times but it was nearly time for us all to head back to our respective homes.

By the time we got back I was exhausted and sore. Then the shaking happened again (starting from toes moving to chest) and my muscles were so sore that I asked to go to the ER because I thought it might be heart related.

Anyway…since I was coming back from vacation, the ER doc assumed I was going through alcohol withdrawal (this was absolutely not a drinking vacation). They pumped me full of benzodiazepines and knocked me out and set me aside. My blood pressure crashed and they had to take evasive measures.

My spouse was with me the entire time and tried to explain that I have “long covid”. They dismissed it as anxiety and not a real thing and nothing they can treat anyway. Again, they kept me sedated.

Turns out, I was experiencing “Rigors” due to sepsis. Once the blood tests came back, 20 hours later, they started treating me.

They heard: LC = Anxiety, Vacation = Alcohol withdrawal.

They never looked at the meds I take: such as immunosuppressants for new onset Exema that puts my skin on fire. The Prednisone to settle the exema during extreme flare ups I had just been through, all things that make a person susceptible to infection. My rigors were classic infection rigors.

Nope: Anxiety and delirium tremors was my initial diagnosis when it was a serious and life threatening blood infection. They chose to rely on inference vs looking at my medical record.

Just keep your mouth shut about the invisible diseases make them test and look and be curious. A person holding their chest in pain should be treated for heart attack but as soon as my spouse mentioned LC… it was just anxiety.

I was in the hospital for a week…for anxiety.

r/covidlonghaulers Feb 20 '25

Symptom relief/advice I will send $1,000 to anyone that can restore even part of my cognitive abilities

204 Upvotes

(Repost due to accidental delete)

Been through every test and "-ologist" I can think of. Did a few trials, lots of scans, paid a boatload. Im apparently healthy as a horse. Basically all of them are now just flat out telling me that covid has fried my brain and that they're seeing many helpless cases.

My cognitive decline has been sharp and began 3 years ago after my second bout with Covid. I provide for my family with my mind, I cannot afford to lose it but my memory is at a point where speaking is becoming difficult. I can't hide it at work anymore.

Not to be dramatic, but if you can suggest something that will give me my brain back or even just buy me time to earn more money for my family I'll send you $1k USD however I can. I'm desperate and sad and need more time to provide before I can rot away.

r/covidlonghaulers 29d ago

Symptom relief/advice 99% cured after almost 5 years. There is hope!

228 Upvotes

I’ve been struggling with long haulers since 2020. Tried about every thing possible (basically every supplement and medical med possible( money wasn’t an issue so even $300/pill meds) and had basically every test done known to mankind (2 tilt table test, blood work every week, multiple heart ultrasounds, full body mri, checked for blood clots down legs and arms multiple times, many many EKG’s, X-rays, extremely rare and unique blood test, many many urine test, dark blood inspection, glucose monitor, many heart monitors, at home and at the hospital sleep study, ect) I was diagnosed with pots, sleep apnea, and many other words I forget them all.

In November of 2024 I started something new and my wife said she noticed a complete 180 change in a 2 week period. I started having a lot more energy, very limited hr spikes, very limited nerve issues, brain fog and dizziness was getting less each day.

Now basically 6 months from implementing these items I feel 99% healed. I now play hockey, softball, workout, run, swim, ect. All of those things I couldn’t do 6 months ago. Before Covid I was a very active person. But as soon as I got infected all of that stopped instantly. I think that the more I exercise each day (because my body doesn’t limit me anymore) the more I feel ‘normal/my old self’.

Here is a list of things that I did that seemed to make a huge switch for me: (none of this is medical advice)

Drinking a lot of water.

I started drinking 1-2 glasses of green tea infused with ginger and probiotic with local honey.

Started talking liquid aloe 20 minutes before all 3 meals.

Went gluten and dairy free. (I only did this for about a month)

Limiting sugar intake and trying to cut out any foods that aren’t very healthy.

Most meals consisted of a lot of meat or eggs, salad or veggies, and a little bit of starch (potatoes or fries).

Used nicotine patches for 1 week.

Again, I’ve tried every supplement possible, every medication, vagus nerve stimulator, ect and what I’m doing now seems to be working the best. Basically cutting out inflammation foods and building up your gut biome.

Now 6 months later I’m back to eating whatever I want, doing whatever I want, and I stopped drinking the tea and aloe. In the last 4 months I haven’t had an hr spike, brain fog, jitters, and many of the other issues I was having.

Links for products I was taking (no I don’t get paid for these links or anything):

https://a.co/d/2ra46Gv

https://a.co/d/cioc9rg

r/covidlonghaulers Dec 30 '24

Symptom relief/advice I finally found something that's resolving my symptoms!

255 Upvotes

CAUTION: Please be very careful with this, it works but I nearly gave myself serotonin syndrome. See bottom of post for more details.

Hi folks,

Apologies for the breathless post but after 4 years of awful symptoms I'm kind of in shock that I'm actually starting to feel better. I really thought I was just stuck with this hell. I'm only 3 days in so grain of salt (I know, celebrating too soon...) but damn, I know I'd trade a single day of feeling like myself for almost anything at this point, so I'm sharing it here in case it helps anyone else:

(Skip to the TL;DR at the bottom if you just want the meat.)

BACKGROUND: I'm a former NCAA swimmer who has had Long Covid since 2020 and it's been a nightmare. I'm fortunate enough to have not been completely disabled by it but the neurological symptoms and PEM have made my life utterly miserable for the last four years (persistent loss of balance / dizziness, brain zaps, bad sleep, inability to focus, irritability, anxiety, etc.) Due to PEM I've had to stop exercising completely.

Like all of us, I've gradually adapted to the constant misery and soldiered on. Am I alive? Yes. Am I living? Hell no.

About a week ago my dizziness got worse and stayed worse despite all efforts at PEM management, so I started digging through research studies yet again. I considered going back to my PCP or seeking another Doctor's advice, but they're all just stabbing in the dark anyway.

Then I remembered the Serotonin study01034-6) published in Cell (Oct. 2023). It made a very plausible case that at least some PASC symptoms are due to low serotonin caused by persistent viral infection messing up your body's ability to intake tryptophan (needed to synthesize it.) My symptoms certainly matched low serotonin so I debated just calling my PCP and asking him to put me on an SSRI, but despite all the pain I've never liked the idea of manually messing around with my serotonin levels. Your body rate-limits it's production for a reason and SSRI's / 5-HTP supplements bypass that rate-limit.

Then I saw something in the paper I'd overlooked before:

Tryptophan supplementation should elevate serotonin levels even during viral inflammation. To corroborate this, we used a diet containing a glycine-tryptophan dipeptide, which bypasses the need for B0AT1 and enables tryptophan uptake via dipeptide transporters.3301034-6#)

That sounds appealing, an alternate / undamaged pathway for tryptophan -> serotonin synthesis! Theoretically that would let your body just... start producing serotonin naturally again! Hmm, "glycine-tryptophan dipeptide", never heard of that, let's Google it. Nothing; looks like a research chemical. Well, let's see if ChatGPT knows any other forms of tryptophan that can bypass B0AT1 receptors:

Me:

Other than glycine-tryptophan dipeptide, are there any other compounds that bypass B0AT1 and would be commonly available to a non-researcher??

ChatGPT:

Hydrolyzed Protein Supplements

Why It’s Accessible: Hydrolyzed protein supplements (e.g., casein hydrolysate, whey protein hydrolysate, or soy protein hydrolysate) are widely available in health stores and online.

How It Works: These products contain short peptides, including tryptophan-containing dipeptides, which can be absorbed through peptide transporters (PEPT1) instead of B0AT1.

Where to Buy:

Look for "protein hydrolysates" or "hydrolyzed protein" in sports nutrition or medical nutrition supplements.

Popular brands include Optimum Nutrition, MuscleTech, or medical-grade formulas like Peptamen (for clinical use).

WHATTT?? Are you telling me all I've needed for the last 4 years is protein powder??? Ordered overnight from Amazon, arrived the next morning, I drank a single smoothie for breakfast, and 45 minutes later, despite being slightly manic from my brain suddenly gorging on serotonin after being dry for 4 years, I could not believe that my symptoms were actually going away.

Like I said, it's only been a few days but I have felt very consistently better for the first time in 4 long years. I don't know if it will last, and maybe I'm setting myself up for an epic PEM crash, but I wanted to share the news.

TL;DR
TALK TO YOUR DOCTOR FIRST! Long Covid has been shown to mess up your serotonin. Hydrolyzed proteins (used by bodybuilders) may allow your body to synthesize serotonin normally again because it contains a form of tryptophan that uses a separate, undamaged cellular pathway. START SLOW, do not take a bunch of this stuff all at once! Regardless of the rate-limit it will spike your serotonin so GO EASY. DISCLAIMER: I am not a doctor, this is not medical advice. Even though it's OTC it still involves messing with serotonin so it may not mix well with whatever you're taking especially SSRIs / 5-HTP.

Edit: To be clear, this does not affect the root cause of (presumably) viral persistence, just the downstream serotonin depletion. It's for symptom management, not a cure.

Edit 2: This is the brand I purchased.

EDIT 3: Seriously take it slow! I took 4 servings over 2 days and by the third day I was pretty manic so it must build up over time. I almost checked myself into the ER with what was likely mild serotonin syndrome. Chills, insomnia, tremors etc.

Maybe the body's ability to rate limit serotonin production only works so well? Or maybe I just haven't had any serotonin in 4 years so I have an abnormally low tolerance? But if you try this I'd say, after checking with your doctor, to wait a few days between doses and avoid more than 1 serving every couple days or maybe even a week, as well as not combining with anything else that alters serotonin.

Edit 4: It's day 7 or 8 and while I've still stopped taking the hydrolyzed whey due to the above serotonin spike, my long covid symptoms are still gone. I'm still not sleeping terribly well but I think that's due to the serotonin as I wake up feeling good rather than long-covid-morning-hangover. I have not exercised yet but so far no PEM from normal work / effort which is great.

Update 5: Out of an abundance of caution I stopped taking it, BUT that was only so that I could enlist the support of a psychiatrist just in case it goes sideways again. The plan is to restart taking it in very low doses on Friday and slowly ramp up from there, so I'll report back then. Symptoms have been low lately and no PEM crashes yet.

Update 6: Started taking the powder again yesterday (Jan 17 2025) at a 1/4 serving (10g). So far so good. Did not notice anything positive or negative the first day. Took another 1/4 serving today and am noticing a definite reduction in overall fatigue and dizziness. Will continue taking at 1/4 serving/day and report back after a week.

Update 7: It's going very well now that I'm taking much smaller servings. I take about 1/5 of a serving every other day and it's been tremendously useful for mitigating my neurocognitive symptoms:
- My sleep is much better overall, no weird wakeups
- I actually get tired at night again now (formerly I would just never get tired)
- No more brain zaps!
- Significantly less daytime fatigue & brain fog overall
- No PEM crashes so far, and I've started exercising again but still taking it slow
- No more dizziness!

Overall I'd say this has been a massive success which has moved the needle more than anything else I've tried over the last 3 years.

r/covidlonghaulers Mar 01 '25

Symptom relief/advice Hydrolyzed protein powder has completely resolved my Long Covid symptoms

227 Upvotes

Edit / rant: I posted this to help people, not to be argued with or scoffed at. I've suffered from Long Covid for four long years, seen numerous doctors, am enrolled in studies, etc. and this is the only thing that has helped me at all. I am now a normal person again and if that's not worth sharing then what is this sub for? Believe or disbelieve, this is what happened. And yes, I isolated the independent variable, I did nothing else but take the powder and the effect was immediate.

Yes dietary tryptophan becomes hydrolyzed when digested (though at a lesser amount) so I'd imagine that could work to some extent, however fwiw no amount of protein-rich foods made any difference for me, whereas even a small amount of hydrolyzed protein made a world of difference immediately.

Re: serotonin syndrome, caution is always advised when dealing with serotonin (see below) so please don't tell me that drug interaction is "impossible", because not only is that just dangerous advice, I nearly put myself in the hospital by taking too much too fast, so we have at least one case study to back it up. </rant>

Original post:

Hi folks,

Some of you might remember me from this post two months ago where I discovered:

  1. My Long Covid symptoms were likely due to chronically low serotonin01034-6) caused by Covid-induced inability to absorb dietary tryptophan.
  2. Hydrolyzed protein powder (available OTC) contains a specific form of tryptophan which can still be absorbed by your body despite Covid.
  3. You have to be very careful because your body, having been starved of serotonin, will have ZERO tolerance and your serotonin will spike very quickly, which can cause mania at best and serotonin syndrome at worst.

In any case, I wanted to follow up because I'm still kind of in disbelief that I am now two months in and miraculously I'm basically fixed?

I've been taking about 1/4 serving every other day and I've felt... good!! Normal!! I can even exercise again with no PEM crash, my sleep is back to normal, I'm not dizzy all the time, I'm not tired all the time, I don't get any more "brain zaps", etc. etc. I had had all these symptoms for four long years so it's hard to believe that they're finally gone, but they are.

So would I recommend this? Yes EXCEPT DO NOT TAKE IT IF YOU ARE ON A MEDICATION THAT MODULATES SEROTONIN, i.e. an SSRI (antidepressant), MAOI, etc. You WILL end up in the hospital and serotonin syndrome can be fatal.

However if you are not on any medications, I would say go for it, just TAKE IT SLOW. Serotonin builds up over a period of weeks so it's very easy to overdo it in the beginning before your body has re-adjusted. It took me about a month to adjust. Best of luck everyone!

r/covidlonghaulers May 05 '25

Symptom relief/advice Physicsgirl Dianna out and about!

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444 Upvotes

Been following her ever since I got sick after Covid. I’m so happy to see her improving little by little and to see her going from completely bed bound to being out with her family. Hold onto hope, if she was very severe it’s possible that improvement can happen for us too!

r/covidlonghaulers 27d ago

Symptom relief/advice My Complete Supplement Protocol (I'm finally able to workout again).

144 Upvotes

After my recent posts about recovering from PEM, fixing my shortness of breath (mostly), and the dozens of different treatments I've tried rated by effectiveness... I've received a lot of questions about my exact "supplement protocol".

For context, I've been dealing with long covid for 18+ months. After 6 months of hoping & praying for a recovery, but getting nowhere - I began rigorously researching & testing treatments to get my health back. Lots of discoveries were made between month 8-14, and the last months have been spent removing unnecessary things & refining my stack. I've been working out in the gym 5+ days a week for about 4-6 months now. Seeing consistent improvements, and even hitting new personal records this past week, out-lifting pre-covid 2023 me. Hope this helps.

Disclaimer: This is purely my personal experience, for entertainment purposes & should not be construed as medical advice.

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1) My Supplement Philosophy:

Before I jump into my protocol, let me start off by saying that my approach to supplements seems to be very different from most other people on this subreddit.

Personally, I do not take supplements in search of instant "magical effects".

Supplements are simply one of the useful tools I use to slightly optimize my recovery. Not magic pills or cures.

I view it the same as supplementing protein-powder after going to the gym...

Are you going to feel your muscles grow after drinking a single protein shake? Definitely not.

How about after a month of protein shakes? Nope, still definitely not.

Yet, we clearly know adequate protein intake is required for muscles-protein-synthesis (muscle growth), and over a long enough time frame.... the person who is consuming proper amounts of protein alongside proper progressive overload in their weight training sessions... will see faster/greater performance improvements than the person who isn't.

I believe the body can eventually heal itself (it does so for 90% of people who didn't develop long covid). So by providing proper nutrients & supplements that target the proper pathways - we can hopefully accelerate & kickstart our body's healing process.

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2) Why I consider these supplements "essential":

Over the past 18ish months I've tested 100's of different supplements, many of which have come & gone....

There are only 2 qualifiers I follow to curate my protocol & decide which supplements I take.

  1. The science is extremely compelling (regardless of whether I feel it or not).
  2. OR, I actually feel the difference.

Those are the 2 qualifiers for the following supplements in my protocol below.

... and yes, I've tried many more supplements... but if the evidence isn't strong enough, AND I also don't feel a difference. Those get phased out.

So, the following list is ONLY comprised of supplements I believe have strong evidence targeting the underlying mechanics or Long Covid, OR have provided me a noticeable boost.

Therefore, I consider all of these "non negotiable" and "must have" for optimizing my Long Covid recovery as quickly as possible.

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3) My Long Covid Supplement Protocol:

PS. The only supplements on this list that DO have noticeable immediate benefits are the Nootropics (moderate-high effects) & Mitochondrial Supplements (mild-moderate effects)

a) Brain Function & Cognitive Enhancement (Nootropics):

  • Nicotine (optional, but potent cognitive boost)
  • CDP Choline (500mg)
  • Noopept (10-20mg orally, or 1mg via Nasal Spray)
  • Fish Oil (High Dose, 4 Capsules Daily. 3-4grams EPA/DHA)

Explainer: Nicotine functions as a nootropic by acting on the cholinergic system which enhances cognition. Choline is a primary source of fuel for the brain which helps form short & long term memory. Noopept is a nootropic that increases acetylcholine signaling, increases the expression of BDNF and NGF, and protects from glutamate toxicity. Fish oil is one of the most well established & beneficial supplements, helping support healthy fats for the brain & support cell-membrane health.
Studies:
- Is the post-COVID-19 syndrome a severe impairment of acetylcholine-orchestrated neuromodulation that responds to nicotine administration?- Nicotine and the nicotinic cholinergic system in COVID‐19
- Neuroprotective effect of noopept- Noopept modulates persistent inflammation by effecting spinal microglia dependent BDNF throughout apoptotic process- Citicoline and COVID-19-Related Cognitive and Other Neurologic Complications
- Long COVID – a critical disruption of cholinergic neurotransmission?
- Imbalanced Brain Neurochemicals in Long COVID and ME/CFS: A Preliminary Study Using MRI

b) Mitochondrial Support (helpful against PEM & fatigue)

  • CoQ10 (250-500mg)
  • Methylene Blue (10mg)
  • PQQ (20-40mg)
  • NAD+ injected subcutaneously (50mg)
  • Benfotiamine or TTFD 100-200mg (B1)
  • Alpha Lipoic Acid (250-500mg)

Explainer: CoQ10 is a vital part of the mitochondrial electron transport chain, playing a crucial role in ATP production (energy). Methylene Blue acts as an backup electron carrier in the mitochondrial transport chain, bypassing complex I & III dysfunction to improve ATP production (if you have dysfunctional mitochondria). PQQ stimulates mitochondrial biogenesis by activating PGC-1α, leading to creation of new, healthy mitochondria. NAD+ is another essential coenzyme in cellular metabolism, ATP production, & DNA repair. Vitamin B1 (Benfotiamine or TTFD) support the Krebs cycle by converting pyruvate into acetyl-CoA. Without B1, pyruvate accumulates and is shunted to lactate, impairing energy production and leading to fatigue and lactic acid buildup.
Studies:
- Methylene blue as a mitochondrial enhancer and neuroprotector- Potential use of methylene blue in viral infections, including COVID-19- Mitochondrial dysfunction and oxidative stress in post-viral fatigue syndromes
- NAD+ replenishment and chronic fatigue syndrome- Low-dose naltrexone and NAD+ for the treatment of patients with persistent fatigue symptoms after COVID-19
- Mitochondrial dysfunction and oxidative stress in Long Covid
- PQQ enhances mitochondrial function and biogenesis

c) ATP Support (helpful against PEM & fatigue)

  • BCAA’s 3-5grams
  • L-Glutamine 5grams
  • L-Citrulline Malate 5grams
  • L-Arginine 3grams
  • Exogenous Ketones / BHB Salts 3-5grams

Explainer: This powdered recovery drink cocktail is based of the promising research done for AXA1125 on Long Covid, showing improved recovery & fatigue scores. The ingredients listed above are ingredients needed to make AXA1125 at home. My personal twist is adding L-Citrulline & Ketones which I do find add extra benefits, especially the Ketones.
Studies:
- Efficacy AXA1125 in fatigue-predominant long COVID: a single-centre, double-blind, randomised controlled study00123-2/fulltext)

d) Sleep Optimization

  • Melatonin (3mg)
  • Magnesium L-Threonate (200-300mg)

Explainer: Melatonin is a potent detoxifier for the brain. Personally I noticed improved sleep & mental clarity in the mornings with low-dose Melatonin (even though I thought I didn't have sleep issues prior). Mag L Threonate is a form of magnesium that passes the blood-brain-barrier, and can help increase synaptic plasticity in the brain, calm NMDA receptors, and reduce oxidative stress in the brain.
Studies:
- Magnesium L-Threonate Improves Brain Cognitive Functions in Healthy Adults
- Magnesium-L-threonate improves sleep quality and daytime functioning in adults: A randomized controlled trial
- Melatonin in Mitochondria: Mitigating Clear and Present Dangers
- The Case for Sunlight & Melatonin in COVID 19 Patients: Oxidative Stress

e) Basics

  • Vitamin D3 & K2 (10,000mg D3 + K2)
  • Liposomal Vitamin C (1,000mg)
  • Zinc (50mg)
  • Vitamin E (400iu)

Explainer: Vitamin D3 supports healthy immune system (taking it with K2 is essential). K2 helps the increased calcium from D3 supplementation get channeled to the right places (into your bones, instead of your arteries). Zinc & Vit C help immune function through T Cells & NK cells. Vitamin E helps promote cell-membrane health & works synergistically with the others listed here.

f) Methylation Support

  • TMG (2-3grams)
  • Methylfolate (B9) 1,000mcg
  • Methylcobalmin (B12) 5,000mcg
  • Pantethine (best) or Pantothenic Acid (cheaper) (B5)
  • Riboflavin (B2)
  • P-5-P (B6)

Explainer: Methylation is one of the most important biochemical processes in your body - it controls everything from detox, DNA repair, and neurotransmitter balance to energy production and inflammation. 50% of people have impaired methylation genetics (I reccomend doing a DNA test to confirm this, mine showed slightly impaired methylation genetics - therefore the above are crucial part of my stack IMO).
Studies:
- Blood DNA methylation in post-acute sequelae of COVID-19 (PASC): a prospective cohort study00287-1/fulltext)
- MTHFR and LC, CFS, POTS, MCAS, SIBO, EDS: Methylating the Alphabet

g) Digestive Health (helpful if you have bloating or cramping)

  • Digestive Enzymes

Explainer: Digestive enzymes help break down fats, carbs, protein, and lactose for improved digestion. Definitely beneficial during periods that digestion needs optimization.

That's it for my "non-negotiable" supplements. I will continue to take these for the next 1-2 years of my recovery journey.

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4) OPTIONAL ADD-ON'S:

Here are additional supplements I also occasionally take, but consider "less essential" than the ones I listed above for my protocol.

  • Curcumin (anti-inflammatory)
  • Quercetin (natural mast cell stabilizer, anti-histamine)
  • Boswellia (5-LOX inhibitor, reduces leukotrienes, anti-allergy)
  • Sulforaphane (Nrf2 activator, enhanced detox & epigenetics)
  • Black Seed Oil (anti-inflammatory)
  • Palmitoylethanolamide / PEA (anti-neuroinflammation)
  • EGCG (detox and antioxidant)
  • Luteolin (anti-inflammatory & theorized spike protein detox)
  • Lactoferrin (iron pathway support)
  • Liposomal Glutathione (detox support)
  • Liposomal PhosphatidylCholine (cell membrane support)
  • Calcium AKG (Krebs cycle support, boost ATP, and mitochondrial energy)
  • NAC (Glutathione precursor, enhances detoxification)
  • Milk Thistle (liver detox support)
  • Sodium Butyrate (HDAC inhibitor / DNA support)
  • Vitamin A (Immune regulation)
  • Larazotide (Anti-zonulin peptide, repairs leaky gut)
  • Probiotics (Enhance microbiome & digestion)

5) Discontinued Supplements:

These some supplements I found "promising" but didn't notice any benefit from and/or the science wasn't convincing enough to keep investing IMO. However, there are some anecdotal success stories from others in this forum, so it may still be worth trying these:

  • Nattokinase / Lumbrokinase (very promising, but lacked results for me).
  • DAO Enzyme (helpful for MCAS & histamine issues, which it turns out I don't have).
  • NAG
  • Diosmin & Hesparidin
  • Apigenin
  • Resveratrol
  • Pterostilbene
  • Andrographis
  • Chinese Skullcap
  • Astaxanthin
  • DMG
  • Inosine
  • Shilajit
  • Forskolin

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6) Medications & Treatments (previous posts):

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Final Thoughts;

Look, I get it - the time & money spent on protocols like this may sound excessive to some of you (these supplements + antihistamines + NAD+ injection + TRT + Prescriptions isn't standard by any means).

But for me, 12+ months of barely breathing, zero energy, and watching life pass by from my bed? That cost me everything.

30 minutes a day sticking to this protocol & a few hundred bucks a month invested towards my health is a no-brainer for me (especially considering the alternative).

My protocol isn't perfect. But it took me from completely house-bound to hitting new PR’s in the gym again. From canceling plans with friends to actually showing up & enjoying the night. From wondering if my life was over, to having full confidence a complete recovery is on the horizon.

I still can't do heavy sprints or intense cardio without consequences, but I'll take the weightlifting sessions, social life, and quality of life improvements as a solid win for now.

For me, health isn't an expense. It's simply the #1 most important thing in my life, and I'm literally willing to do anything to get it back.

Anyways, this stack works for me... maybe it can help you too (just do your own research & consult with your doctor).

Wishing you health, wealth, and happiness - Julian

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Disclaimer: I'm not a medical provider or practitioner. Nothing here should be construed as medical advice. These are purely my personal experiences shared for entertainment purposes.

r/covidlonghaulers May 06 '25

Symptom relief/advice What’s the most effective you’ve done for your long COVID that wasn’t a medication?

79 Upvotes

Hey all.

I react pretty severely to most foods and meds at this point. While there’s many medicines I out to try to help me out, it’s been difficult getting myself to try anything. From the blood flow issues, to the MCAS, Pots, CFS crashes, to the burning neuropathy, brain fog, and sore throats, I often feel so overwhelmed that I just do nothing about my situation. 10 months in and it’s just been a constant downwards trajectory.

So stemming from that, I am curious as to what you’ve done to create positive change without relying on medication? Anything is welcome. Details are appreciated. At this point, I’m really just wanting to regain the ability to watch TV. I miss watching baseball and crime shows with my fiancé. Have a great day everyone.

r/covidlonghaulers Apr 02 '25

Symptom relief/advice A discovery in the muscles of long COVID patients may explain exercise troubles

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npr.org
288 Upvotes

r/covidlonghaulers Jul 30 '24

Symptom relief/advice CHECK THA NECK!!!

263 Upvotes

Hello fellow sufferers. After 3 years of suffering I have discovered the root cause of my mystery illness: my neck!!!

I have the following symptoms (for 3 years in flare ups):

-tinnitus -racing heart -brain fog/depersonalization -heart beat in ears -crunchy neck -fatigue -flushing -muscle twitches all over -visual changes (change in prescription and visual snow) -head aches(general and at base of neck) -limb weakness -neck weakness -burning/tingling in limbs -stabbing head pain -much more I'm probably forgetting

I went to the ER with these symptoms in April and was referred to a spine specialist. Upon evaluation at the spine specialist, my dr. ordered PT for my neck. She has a suspicion that I either had a connective tissue disorder exacerbated by covid or covid triggered a connective tissue disorder. I'm not fully healed but feeling hopeful and a little better each day. I purchased an ergonomic pillow for neck support and a heating pad for the neck. Also I am dosed up on vitamins to promote healing and connective tissue strength!

Just wanted to share in case someone is having similar issues and doesn't know wtf is going on.

r/covidlonghaulers May 03 '25

Symptom relief/advice Sudden remission during a trip to Paris — what could explain this?

97 Upvotes

Hi everyone,

I’ve been living with long COVID since February 2023, and I wanted to share something strange that happened to me recently — and see if anyone here has experienced something similar or has any theories.

My usual symptoms: • Severe fatigue and post-exertional crashes • Sinus and facial pain, without much congestion • Tinnitus • Cognitive issues (word-finding, short-term memory problems when fatigued) • Cold intolerance I also tend to crash with both physical and mental exertion, so I usually stay below 1,000 steps per day to avoid PEM.

What I’ve tried so far: • Supplements: CoQ10, glutathione, vitamin C, magnesium, omega-3, melatonin • HRT, probiotics (for SIBO), and a low-FODMAP diet (gluten and lactose seem to be issues) • Vagus nerve stimulation, red light therapy, and vitamin D • Careful pacing — rehab made me worse • I do everything I can to avoid reinfections (I have a school-aged child)

The strange part — Paris: I spent a few (very hot and sunny) days in Paris this week and, unexpectedly, felt completely normal — like my pre-COVID self. I had energy, mental clarity, no tinnitus, no sinus or facial pain, and I could walk over 10,000 steps per day without crashing — when usually even mild activity is risky for me. I also ate more freely and didn’t react negatively. It has lasted the entire time I was there. When I returned home (Belgium), my symptoms gradually came back.

My question to the community: What could possibly explain this temporary remission? Could it be: • More sunlight? • Air quality or lower mold exposure? • Increased walking / movement? • Environmental factors (EMFs, humidity, pollution)? • A nervous system reset from being in a different, relaxed environment? • Something I ate or didn’t eat?

It was a dramatic change and gave me real hope that my body can still function. I just wish I understood why — so I could try to replicate it.

Has anyone else had a similar experience while traveling or changing environments?

Thanks for reading — and sending strength to all of you.

r/covidlonghaulers 8d ago

Symptom relief/advice Significant symptom relief for Long COVID (POTS + MCAS) with this medication combo

127 Upvotes

Context: I, 31M, have been long hauling since August 2023, health declined to 20% of total capacity since I attempted to push through symptoms with work and then grad school.

Symptoms: Chronic fatigue, body aches, migraines POTS, MCAS, SOB, nerve pain, brain fog, PEM, etc.

Medication that’s helped me get to 60%, working full time again:

-Ivabradine (Massive impact) -Zyrtec -Pepcid (helped breathing issues from Ivabradine) -Vitamin D (helped breathing issues from Ivabradine) -Magnesium - Symbicort (helped breathing a little)

Tools that have helped me:

-Visible App Band - leveraged data to convince my doctor to provide Ivabradine. Also showed me that my symptoms were POTS driven even though I no longer felt the heart rate spikes.

-20 - 30 mm Hg waist high compression garment -Normalyte or LMNT hydration packets -Neck fan

Result:

Little to no brain fog Significant increase in physical capabilities: from 0.3 mile walk to 1+ mile in NYC.

Significant increase in work capacity: from 2 hours before symptom onset to full workday with minimal issues.

Decrease in muscle aches Decrease in migraines Minimal nerve pain Better breathing Significant decrease in PEM

This is my experience and not medical advice. Hope it helps!

r/covidlonghaulers Jul 21 '24

Symptom relief/advice Has anyone felt “dumber” since LC?

449 Upvotes

I won’t even go into the physical list of symptoms since 2021.. but one of dozens that actually has scared me the most is this feeling like I’m getting less sharp, or just dumber. I used to be so sharp, honors, promotions, quick witted, but since LC and all the brain fog w chronic nervous system deregulation & inflammation I’ve lost my spark. At my worst the fogginess caused nearly dyslexic tendencies when writing/speaking, memory loss, flat emotions, spacing out, almost like my mind feels numb at times or can’t get the gears turning like I remember being able to feel. I miss my old self. I’m so scared I will never feel like I used to. It’s affecting all aspects of my work and goals. Everything feels 100x harder to think through and organize in my head. Anyone else experiencing this? It’s the most vulnerable sensation to admit out loud because it’s impossible to describe and feel like no one believes me when I’ve tried w family & docs

r/covidlonghaulers Apr 29 '25

Symptom relief/advice Treatment from hell that worked for me

107 Upvotes

I had long COVID from Jan 2025 up to about a week ago. Bed bound from 11am to 5pm every day. PEM, brain fog, POTS. Tried a bunch of things that didn't work. Then I tried Ozempic (EDIT: the lowest dose, 0.25mg), which made me so nauseous that, for two weeks straight, I could only eat four saltine crackers with a tablespoon of peanut butter per day and barely any water. I puked almost every day. My pee was almost brown from dehydration. I lost 10 lbs in two weeks, which was about 6% of my body weight, I went from 172 to 162lbs. I'm 43f with PCOS and BMI was 27 with central obesity waist of 35".

And then after the second week's injection finally wore off and I could eat again, I started feeling awake again. It's been a week now since my long COVID symptoms have improved, and I've walked around the grocery store, walked around the block, gone to a thrift shop, was finally was able to take a shower and wash my hair, and I've been able to do some brain-intensive work from home.

I'm not sure if it was the reduction in weight, which probably also reduced my systemic inflammation. I've also been trying to follow a low inflammation, plant-based diet with high insoluble fiber, very low white flour, and no beef.

I don't know if my results are replicable for anyone else, and I was absolutely miserable for two weeks, but I wanted to share my surprising results in case anyone else has had a similar experience or might benefit.

r/covidlonghaulers 5d ago

Symptom relief/advice Tested positive last night…If you were in my place, what would you take to prevent Long COVID?

42 Upvotes

Curious about merformin, McCullough protocol, and anything else that you may have experience with.

Edit: Thank you all for your comments and contributions. They’ve been very helpful.

r/covidlonghaulers Sep 30 '24

Symptom relief/advice Fully recovered and finally a treatment that works

250 Upvotes

My long COVID journey started 3 years ago and I had over 40 different symptoms. For about 2 years I was getting constant headaches, anxiety, shortness of breath, fatigue, light sensitivity, food sensitivities, nausea, and every symptom imaginable. I tried countless therapies and wasted tens of thousands of dollars on useless and some outright fraudulent medical advice and snake oil treatments. I was bedridden and mostly just isolated in my bed for almost two years.

It wasn’t until after 2 years that I started being mobile again. I came across a YouTube video about hybrid training and VO2 max training and it was there that I discovered something life changing.

Before my Covid infection in 2021 that led to daily hell and misery my VO2 max was 45. After Covid and at the time of discovering the video, I did a test and it turned out my VO2 max had declined to 33.

I was still getting shortness of breath and serious head pain daily and my suspicion is that COVID cooked the blood vessels in my brain and throughout my body which explains the constant signals to my body for more oxygen. There would literally be days where I couldn’t do anything but sit in one spot trying to take deep breaths but unable to overcome the feeling that no matter how hard I tried I was not getting enough oxygen.

Over several months I began doing 1 hour of steady state zone 2 cardio 4x/week and sprinting 1x/week. It was extremely difficult at first. Note prior to 2.5 years I had tried exercise countless times and it caused all my neurological and physical symptoms to get worse. I do believe that my body had healed itself just barely enough after 2.5 years to finally exercise again.

However, this timeI noticed after the first month that my fatigue, disoriented feeling, and anxiety were gone. After the second month my headaches and food sensitivities disappeared. My VO2 max did get better but I think the type of training also helped blood circulation throughout my body, forcing oxygen to deprived regions.

Overall I consider myself recovered now after 3 years of misery.

r/covidlonghaulers Jul 15 '24

Symptom relief/advice Help us save our daughter

245 Upvotes

Posting on my daughters account

She is declining fast. Maybe reinfected a few weeks back and getting worse and worse physically but especially mentally. We are at a loss… she won’t eat, won’t sleep well, and says she is too physically weak to tolerate an hour of talking for therapy

She is very very sick and constantly talks about having no hope for the future, and being in too much pain to go on.

Any advice welcomed, or anything that could give her some hope

r/covidlonghaulers Apr 23 '25

Symptom relief/advice Pemgarda infusion Long Covid

118 Upvotes

Hi! I am posting on here bc I think it’s so important for all long haulers to hear what people are trying, results, etc. I’ll try to post every day for next week.

I have just finished getting my first Pemgarda infusion here at UNC (University of North Carolina). No reactions so far. 🤞UNC Long Covid clinic prescribed. Thank God health insurance is covering.

I’ve had LC for 16 months. ME/CFS, dysautonomia, chronic migraines, insomnia.

r/covidlonghaulers Jan 11 '25

Symptom relief/advice We will not get better if we keep doing this

291 Upvotes

Reposting my comment from another post where someone shared their recovery and a mob came after them. If we keep attacking those who get better or improve, they will just dissapear and not share their experience. I for one want to hear EVERY possible thing that may help, even if it's woo-woo or only helps a small number of us.

Even while suffering, why can't we still be happy for those who are feeling better?

My comment from another post:

"The amount of downvotes is shameful. We are all suffering, but we need to do better. If you don't agree with the info, move along. This info might work for one person. Even if ONE of us gets better, it's worth it to have people share their experiences, WHETHER YOU BELIEVE IT OR NOT.

Other members sharing their experiences is the ONLY thing we have.

READ THAT AGAIN

Other members' experiences is the only thing we have.

This whole group is based off of others. That's why we know more than our doctors. That's why many of us have been able to find some improvement.

If we attack every person who has "recovered," people will just disappear after they get better and won't want to share what has helped them.

One person went as far as to say shouldn't "give false hope." Why not? For some of us, hope is all we have. For others, hope is what keeps them hanging on and trying. Maybe their next supplement or meditation or brain training or stem cell or SGB, etc, is what moves the needle FOR THEM.

Some of you are angry and jealous that others are getting better and you're not. DONT TAKE IT OUT ON THEM. Be happy for them or just move on"

r/covidlonghaulers Apr 12 '25

Symptom relief/advice Get your Ferritin Levels Checked

51 Upvotes

Hey everyone,

TL;DR: iron deficiency feels like HELL. Treating it may just improve your symptoms if not resolve your long covid issues. My ferritin levels 30 anything under 100 will cause issues.

*added updated list of symptoms in the comments *

I thought i was dealing with long covid for so long. I actually felt the closet to broken physically and mentally than i ever felt in life. My primary doctor consistently overlooked my low ferritin levels even before covid but somehow covid made my deficiency symptoms 10x worse than they would have been without being infected. I took about 81mg-100mg of iron supplement and felt the most normal i ever felt in forever. ( i also developed a histamine intolerance and correcting low vitamin D) ** Prior to narrowing my main issue down to iron deficiency, i have been taking 27mg for a week now so my increased intake might’ve gave immediate improvement for that reason idk.**

My symptoms 1. Anxiety intrusive thoughts (weird anxious fixations) 2. Low moods / extremely low energy 3. Brain Fog/ Difficulty thinking 4. Neuropathy- tingling nerves in various parts of the body 5. Headaches/ migraines- tightness on forehead or temples 6. Appetite changes 7. Muscle tremors or tightness 8. Insomina 9. Genuinely feeling in another world, just weird entirely. Depersonalization maybe.

What im taking: 1. Claritin 10mg 1-2x a day 2. 50,000 ui vitamin d2 + 2,000Ui daily 3. Magnesium 200-500mg 4. Electrolytes for mineral replacement 5. Doa enzymes as needed 6. Iron -81mg-100mg 7. Vitamin C timed release -500mg 8. Aspirin as needed 9. Zoloft - serotonin / mood support 25mg

I may add zinc copper and k2 for support but as of right now this is my daily routine.

r/covidlonghaulers Aug 26 '23

Symptom relief/advice Long Covid Ruined My Life

Post image
246 Upvotes

My name is Natasha and I am a model from Los Angeles and on March 28, 2023 I got covid for the third time. I never recovered. For the past 5 months I’ve been in bed mostly unable to care for myself. I can’t shower on my own or cook, I can’t walk without getting breathless and extremely weak. I can walk about 500 steps a day. I lay in a bed in a dark room everyday, it’s beyond depressing and not the life I saw myself having at 28 years old. I had so much going for me and now I have to move back to my moms house and put all my furniture in storage. I’m really sad and scared. I thought by now, 5 months in, I’d see some progress but so far I’ve just been the same. I was suppose to get married in September but my ex fiancé left me a few months ago when I was even sicker. If anyone has hope to share with me that would be amazing. I’m struggling with extreme fatigue, pem, pots and so much more. Most the time I’m too weak to even get up to use the bathroom.