The loneliness can be over wealming, no I'm not talking about you living alone, I'm.talking about going through this by yourself,.as you can be surrounded by many, and still feel isolated, for some isolation may be ideal, but for most

that has a social life before all this,

the long term effects can be debilitating, depressing, and frustrating, as this is an invisible illness, many people find themselves helpless, and decisions may be hard, WAITING can be hard,

moving around, trying to connect with the right people, and fight not only this illness but the fear of living.

hello everyone,

i’ve (30F) never posted on reddit before so please forgive me, but i want to see if anyone is in a similar position or has any advice. i do have a follow up appt with my hematologist next week and am waiting on some results but still wanted to make a post while i wait.

some background for context- i have PCOS (now PMOS), was diagnosed in 2020 after having symptoms my whole life, but no doctor ever told me an irregular period wasn’t normal so i never knew. finally in 2020, i lost my period for at least six months which made me go get checked out, and they told me i had pcos and put me on sprintec birth control which was the beginning of the end for me…it gave me insane cystic acne which i’ve never recovered from, and i was only on it for three months. i gained a lot of weight and eventually went on accutane when i really shouldn’t have about two years ago. i had a SEVERE neurological reaction to the accutane and was told it likely gave me intracranial hypertension when it gave me what i can only describe as the most intense migraine i could ever imagine, and i’ve never fully recovered. i have had a pretty constant headache almost every day, all day, for almost two years after being on it, and i only took it for one month. i was hospitalized and had several scans and a lumbar puncture and have tried diamox and topomax to lower my pressure but nothing really helped my pain much besides possibly losing weight on zepbpund for a while, but i think that’s bc it lowers inflammation maybe.

also to note- i do believe some of my issues are related to long covid, my first known infection was symptomatic in june 2023 and second was asymptomatic in july 2024, right before i started accutane. covid has been proven to cause intracranial hypertension as well as menstrual issues. i was living in new york at the start of the pandemic and was briefly sick in january or february 2020 which was around when i lost my period, so it’s possible that was actually my first infection which caused me to lose my period for all those months, meaning following my third infection is when my symptoms really took off). i also unfortunately contracted mono around the same time in summer 2024 but didn’t find out until september due to its very long incubation period, so essentially i had two viruses wreaking havoc in my system before i then made it worse by taking a neurotoxic medication for acne.

throughout the past few years of seeing specialists, no doctor EVER suggested i test my iron and ferritin. i kept seeing ppl talk about it on tiktok so i finally asked my GP a couple weeks ago to test it. my ferritin came back at 7 ng/mL, my total iron at 65, saturation at 16% and binding capacity at 415. they also tested my vitamin d which came back insufficient at 28. as soon as i saw the results online i called several hematologists to find one with availability to make an appt asap and then called my GP to have them send my results over. my GP only wrote a note to start taking iron and vitamin d pills…one week later i got in to see a hematologist who said that it was very odd that i was clearly iron deficient but my hemoglobin, hematocrit and red blood cells were too high, especially as my periods are short and very light due to pcos, so she wanted to test them again and ordered a few genetic marker tests like jak2 among others to rule some things out. she diagnosed me with iron deficiency and secondary polycythemia. she also tested b12, which was on the lower end at 368. i have my follow up with her next week, but both my hemoglobin and hematocrit came down at the retest, though my red blood cells only a small amount, so im wondering if dehydration caused them to raise before the test with my GP bc it was early in the morning and i don’t think i’d had much water.

i wasn’t expecting my ferritin to be in the gutter when i asked for this to be tested, and assumed all my symptoms were bc of pcos, intracranial hypertension from my accutane complications, or other possible issues due to my past covid infections, but now i’m wondering if this is a key factor in some of my symptoms like extreme fatigue, constant one sided headache, burning and scalloped tongue, major hair loss, red band at end of weak and brittle nails, white spots on nails, heat hives and white spots on my skin after a hot shower (newish symptom), racing heart/palpitations, breathlessness, anxiety, brain fog, chest pain, eye pain/droopy eyelid, among others.

i didn’t intend on writing a novel here, but if anyone has any insight on a similar situation or experience, any advice they could give that may help, i would greatly appreciate it. the past two years have been hell for me and my mental health has taken some dark turns. thank you for reading and for listening

edit: cbc test at the time my iron and ferritin were tested were hgb: 14.7, hct: 45.7, rbc: 5.1 and a week later for hematologists test they were hgb: 12.8, hct: 38.6, rbc: 4.41. my mpv went down to 9.1 at the second test and is marked low and my mchc is at the low cutoff at 33.2

Feverfew herb is supposed to help with mcas and can work through the same anti-inflammatory pathways as medicinal mushrooms. Has anyone tried it?

Since getting a 90 day placard from my cardiologist, my health has actually slightly improved. I use the placard everyday at work, since I work at a resort that requires you to park in a parking garage, walk to take a bus, then walk to where the offices are. It added a mile to my daily walking and the 20 minutes from those transitions actually fatigued me so much (especially since symptoms are way worse in the morning).

I have dogs and feel so guilty using handicapped parking if I’m able to walk them 10 minutes a day. Noone at my work knows about my handicapped parking yet, and I’m so worried they’ll confront me about it and I’ll have to overshare to defend myself. I’m so dang grateful to have the placard for giant parking areas, but the invisibility of this illness is tough.

I’m about to give it a go from recommendations from a long covid dr and long covid friends.

However, I’m so fragile already, I confess to being a bit worried that this will be another big mistake.

I’d appreciate hearing peoples experiences of the effects (if any) both immediately and longer term.

I get physiological (ie not mental) panic attacks a lot, so am mostly worried about triggering one. It happened one due to MCAS and mri dye.

Hi, has anyone been prescribed guanfacine and metylphenidate for adult adhd? Did it work better than stimulants for you? I also have autoimmune and long covid related fatigue. Prior to AI and long covid diagnosis stimulants used to help my fatigue, now i feel like Elvanse exhausts me . My prescriber wants go try the above combo. Just wondering if people have tried it and how they found it?

Thanks :)

There seem to be a fair amount of people on board this ship right now who have a respiratory illness. I was wearing my mask when outside my cabin but my husband got sick 3 days ago. There was nowhere to isolate as we are in the same cabin. Now I have a sore throat and a fever. This is my first cruise ever. I have heard they are vectors for catching illnesses. I washed my hands constantly and masked in all public areas. My impression is now that cruises are potential sources for getting sick. I am immunocompromised so thos has been scary for me.

I need advice from anyone who understands the deep pathology of microthrombosis/microclots, endothelial fibrosis, and enzyme therapy.

My Background & Symptoms:
Years ago (2020), my Long COVID started with acute cardiovascular crisis—vigorous heart pounding, extreme MCAS/histamine flares, and sharp, pinching ischemic pains in my chest/axilla and groin.
Over time, the acute heart pounding and MCAS vanished, and my illness transitioned into a permanent state of crushing, anaerobic fatigue. The sharp pains were replaced by a constant, diffuse "hardened" sensation in my head and chest. I constantly feel like I'm at a "high altitude"—breathing is unsatisfying, and I have severe brain fog and sensory overload (microglial inflammation).

The Pathology Theory (The Collagen Bunker):
A few years ago in (2023), i did intense strength training in the gym for a year as that is what my doctor recommended me to do because they did not believe i had long covid. I believe after that, my body realized it couldn't dissolve the amyloid fibrin microclots. To stabilize the blood vessels, my body "paved over" the clots. Fibroblasts laid down dense collagen right over the fibrin, and a new endothelial layer grew over that. The toxic clots are still there, causing severe hypoxia, but they are completely entombed in mature collagen scar tissue. (This explains why my MCAS stopped—the immune system became "blind" to the entombed fibrin).

The Bottleneck:
I have been taking Lumbrokinase (up to 3000 FU daily) for a month. While I got some incredibly faint twinges and minor pressure shifts, it has essentially failed to move the needle. Lumbrokinase only cuts fibrin; it bounces off mature collagen. I believe my natural MMPs (collagen-eating enzymes) are too weak to break through this 8-year-old bunker.

The Dilemma & My Question:
I want to start Serrapeptase at 120,000 SPU (pulsed every other day) to act as an "acid wash" and strip away the collagen scar tissue so the Lumbrokinase can finally reach the fibrin core.

But I am terrified of this:
Because it has been so many years, the collagen scar tissue has likely fused with my blood vessels (intimal hyperplasia). The scar tissue is now literally a load-bearing wall.
If Serrapeptase aggressively eats that collagen, isn't there a massive risk that it will strip the blood vessel down to nothing, causing the vessel to rupture? Pumping blood through a denuded, fragile capillary sounds like a recipe for a cerebral micro-hemorrhage or catastrophic internal bleeding.

Has anyone safely navigated severe, mature fibrosis using high-dose Serrapeptase? Did you get micro-hemorrhages? How do you prevent the Serrapeptase from destroying the vessel wall while it eats the scar?

Any insights would be incredibly appreciated.

I’m here due to Covid. Have had long covid 2 years 7 months.

My symptoms :

* SEVERE cognitive fatigue

* concussed feeling

* confused mentally

* memory loss

* blank mind / numb brain

* vision changes (DPDR) constant 24/7 dreamstate vision that makes it feel as if I’m not really here at all.

Can anyone give me any hope?

I’m feeling like giving up :( I’m trying not to. But I need more capacity to be able to survive in this world.

My husband and I have both been experiencing similar weird symptoms. We have thought of many different things that it could have been that could cause us both to have similar symptoms. (Mold, allergies, some sorta of infection)

The symptoms are but not limited to brain fog, itchiness, heart palpitations(?), weird blood pressure, ect. My husband also has a number of different symptoms and all his symptoms seem to be more severe than mine except for the heart palpitations those seem to be similar to mine.

We recently thought maybe it could be long covid and after reading some different posts on here I think we might be right.

Can anyone tell us how you went about getting diagnosed?

Hi guys! Like the title says, I have been sweating profusely from my armpits the last few weeks. I mean more sweat than I had after a college lacrosse practice.. just sitting at my laptop working. My doctor at Hopkins said it’s from my dysautonomia and some people have used deodorants that have helped, but at this point idk if I’ll be able to wear a short sleeve shirt this summer unless it’s black, I’ll have to wear a hoodie to cover it up. Any help or recommendations from your experience would be appreciated!

About a year ago, pretty much out of the blue, I started to get really tired all the time. Within a few months I was bed bound for most of the day. Showers became washes.

Then it got worse until I lost all motivation to do anything and was pretty much ordering food and only leaving the flat to collect meds.

I don't know I haven't told my doctor about this yet. I plan to in the next few weeks. I'm worried about the stigma and not being taken seriously, and getting diagnosed with depression instead. I'm in the London, UK.

Hi! Looking for advice on treatments. 3 months ago I suddenly developed total insomnia, what felt like adrenaline dumps when trying to rest or sleep, followed by anxiety which turned to depressive thoughts. I physically felt like my brain stopped working. I lost my appetite and interest in anything. I didn't feel much and could not concentrate. I had heart palpitations that would get worse when I stood up.

I was put on Lexapro and mirtazapine for sleep with the rarely taken oxazepam when nothing else would do. I've had times of feeling better, only to dip down again.

I am still struggling and suspecting more and more that this might be long covid.

I was officially diagnosed with ADHD just a few days ago. I am desperate to feel better and like myself 😞

What should I try for the symptoms? Any treatments that could work? I need help 🙏

I'm six years into long covid and I've come a long way but I still have respiratory issues, fatigue and sometimes blurred vision and brain fog. (I'm having trouble shaking these last few symptoms).

I have stuff I need to do but I just feel so tired. How do I know if I am really physically tired or just depressed? Yes, I struggle with fatigue, yes I struggle with depression but how do I differentiate between the two? How do I know when I should be pushing myself and when I should rest?

Edit: I'm not in a crisis or anything, I'm just depressed and am trying to manage. I don't need help with the depression, just want to know how to discern between fatigue and depression so I know when to pace and when to rest.

This article analyses processes as a basis for possible treatments instead of relying on human trials. I can’t begin to understand the explanations of the processes involved in long covid or in the nutritional approaches to treatment. However Nature is a credible journal so am trying some of the supplements discussed. Any thoughts?

The extreme ME-like fatigue has decreased significantly; I only experience crashes every now and then. Even the constant fever now only returns occasionally. POTS, however, is still present. I’ve had alopecia since my first bout of COVID in 2020. For some time now, however, gastrointestinal symptoms have also appeared. Foods that didn’t bother me at all before now trigger either severe nausea and headaches, or vomiting (this recently happened with game: after a dinner, my stomach was swollen as if I were six months pregnant, and at 3 a.m. I woke up vomiting everything up), or intestinal pain and alternating constipation and diarrhea. I get gastritis if I drink wine or coffee. I’m almost certain this is another symptom of long COVID. As soon as one symptom goes away, another one starts. It’s as if my body has become extremely fragile. Do you think it makes more sense to see an allergist to see if histamine is involved, or to see a gastroenterologist?

Long COVID is not just a lingering condition — it’s a complex, multi-system challenge that continues to impact millions of individuals, families, and workplaces.

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What’s become clear is this:

👉 Recovery doesn’t happen in isolation
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I've now been experimenting, on and off, with cacao. I can say with certainty that it has an enormous effect on my energy levels. The days I don't use it, PEM is almost guaranteed to set in. The days I do take it, PEM never sets in. I don't feel the need to sleep during the day.

I've been using 10-15g of raw organic cacao mass in hot water with some coconut milk, pinch of salt, cinnamon, cardamom and cayenne pepper. The spices are not necessary, but seem to accentuate the effects a little bit.

Since cacao impacts the heart, I would start slow, with maybe 2g, to see if there are any negative effects. I got some weird heart issues from LC, so I don't push it with cacao.

One negative I used to get with cacao, was anxiety on the "comedown". That has since passed, and haven't experienced that in a while.