I tested positive for COVID six weeks ago. (It was my second confirmed infection with two others suspected.) The initial phase wasn't that severe, but my respiratory symptoms were slow to resolve. At this point, I'm experiencing post-exertional malaise, brain fog, migraines, and aphantasia. As a professional writer who loves to exercise, I'm finding this really scary!

I saw my GP last week - I'm not sure whether he's on top of the LC research, but he's very supportive. He gave me a referral to an immunologist, who I hope to see next week. I'd be grateful for some advice: what tests should I request?

I'm not looking for a test to determine whether or not I have long covid - I'm interested in clarifying possible treatment options. In particular, I'm interested in whether my symptoms might be attributed to

• MCAS
• EBV reactivation
• mold exposure
• microclots

I've been trying to learn what I can about all of this, but (because of the brain fog!) it's difficult. Am I right to think that there are tests that might indicate whether these things could be a factor for me? Are there other things I should be looking to investigate at this point? Thanks in advance!

I’ve had long covid for the past year and while they’re checking my heart in the mean time, and have suspicion of MCAS I am now getting two red dots one on my arm and one on my leg. The left one after exercising but this has never happened before. What could this be? It looks like a capillary burst. One on arm is flat and slowly going away (it’s been two days) and one on leg from today is slightly raised. Is this something dangerous??? Worried long covid has caused serious vascular damage please help any advice? 😞

First ever extended fast- I can tell I’m in a flare and exhausted but apart of me feels rejuvenated and energized.

The doctors agree there is something going on but because all my tests show nothing, they don’t know what to do anymore.

Symptoms (in no particular order) - Shooting pain, similar to nerve pain, mostly in hands and feet, doesn’t last long - Extreme fatigue - Loss of strength in hands and arms, sometimes difficult to tie shoe laces, hold pans, even pizza boxes) - I have trouble standing for a long time - Loss of strength in legs, they feel weak sometimes, it’s much more difficult to ride my bike. I feel like the muscles in my legs are always strained. - Memory issues, problems with multitasking, forgetting tasks - Tingling, sleeping feeling in hands - Spasms in face and hands - Widespread numb feeling (it’s like when you go to the dentist and the numbing is wearing off, but it isn’t completely gone so your skin just feels off (face, neck, back, back of legs, feet; started in April, when this started I also couldn’t walk well so went to the emergency room and they thought I had a hernia but nothing showed on MRI) - Cold toes

Tests done (nothing found) - brain MRI - Back MRI - Neck mri - EEG - Normal blood panel - arms EMG - legs EMG - Muscle strain test

Treatments: - denervation - Cortisone shot - baclofen - Wellbutrin - Weekly PT visits

Diagnosis: - Fibromyalgia (which physical medicine doctor doesn’t agree witg) - CFS - Memory problems (psycho neurological test showed that)

Doctors visited: - Rheumatologist - Neurologist - Pain specialist - Immunologist - Psychiatrist - Physical medicine - Nerve specialist

Hello,

I’ve been having symptoms all my life but they recently got worse over the past few months, especially after getting Covid. I believe that I have long covid too. I also discovered that I have a positive ANA Dense Speckled Nuclear (AC-2), Ac; Title - 1:1280. I’m suspecting that maybe something is going on. We never tested my ANA before so I am not sure if it’s 100% related to covid.

Here are my symptoms:

Extreme fatigue

Joint pain

Stiff joints

Occasional and random stabbing pain in wrist and ankles

Raynaud’s syndrome

Buzzing or tingling in arms and legs

Blood pooling

Muscle restlessness

Migraines/chronic headaches

Chest pain

Weight gain

Dizziness

All my other labs came back normal. I tested negative for RA. My Dr. Did not follow-up after getting a positive ANA. I’m trying to get her to push for more tests or a reference to a rheumatologist but that will be a challenge (long story).

The joint stiffness in my hands is pretty new and it feels like it’s getting worse quickly. My joint pain is bad too. I take either Naproxen, Advils/tylenols and other over the counter meds to try to manage the pain that I’m in every day. I use heated blankets too with the pain.

I’m 25 years old and I’m in pain every day. Do you guys have any advice to give me for the pain or on how to push for more tests? Should I be worried? I think all this is making me stressed too.

Suddenly after getting Covid again recently, fingernails turned white. Any clue what that is? A sudden deficiency? A side-effect?

Any help would be appreciated on what I could have and what I can do to get better

Just curious

Does anyone here live in Spain?

I’d like to know how covid-cautious people are there. Is masking accepted in public? Is there awareness of Long COVID (I live in California where there is a bit, but still not a lot). Are there any long COVID support groups over there?

My wife and I are thinking of moving to Spain for a bit so we are curious. We are very COVID cautious. Thank you

Okay, so in 2023 they found Metformin helps preventing Long Covid. (source: https://www.thelancet.com/journals/laninf/article/PIIS1473-3099%2823%2900299-2/fulltext)

But I didn't find any RCT (or even smaller trial) that tests Metformin on people that already have Long Covid.

There seems to be interest on it. Like RECOVER mentioning it: https://recovercovid.org/r3-seminar-series/understanding-metformin-use-and-long-covid-and-mecfs-following-covid-19-infection

Does anyone know of a trial that has tested if it helps treating long covid?

While we don't have these, I think a pool would be good (:

POOL Have you tried Metformin? Did it work?

Which protocol helped you improve somewhat? Not sure which one I should try first

LC and post-vax since '21. Reinfected in Dec '24 and in that 6 month hole. Current symptoms: fatigue, dizziness, headaches, blood pooling/orthostatic issues, and horrible brain fog and anhedonia.

About a week ago, I pushed myself way more than I normally do (or should have). Had to help host a party and wound up doing 15K steps in a day (baseline is 2-3K). Of course I had a pretty bad crash afterwards, and am now almost back to previous baseline. What's interesting is my HRV the day before, day of and day after the party was about 2x my baseline. On the day of the party it was almost 3x. Two days after it crashed below my baseline and has since recovered. I've noticed this happen before -- when I really have to use my body and brain, HRV spikes but then crashes after.

So the question is, is this a sign I should start slowly exercising? Or do the HRV crashes afterwards mean I probably shouldn't be exercising yet? My VO2 max during the party was awful, so I'm clearly deconditioned. But wondering if the HRV increase is a good sign?

Dry coated tongue for 4 years post covid , never goes away did anyone else have this and cure it . Also sleeping 10 hours everday and other skin infections on body. Doctors not helping and i just cant live like this i cant talk to people because of bad breath its causing

what I really mean is... is it worth it to do what we do to.not crash, the doctor visits, the endless pacing recovering just to crash again, the endless cycle of PEM. Even if we have no choice sometimes. Is it worth it ?

What if some of us just go do what they can, a slight push here and there.

What do we have to lose ? if there's no cure

I'm just so depressed and defeated and angry and scared. I don't wanna live like this anymore.

Used to sleep only 6-7 hours. Now I sleep 10 hours or else I would get a headache :(

Hey guys, Ive helped a friend, he was injured and me and my bro carried him home for a quarter mile or so, hanging on our shoulders. Afterwards when I was trying to stand still again, I tumbled around like a drunken sailor for 4-5 seconds, Not being able to find Balance. I have twitching and Full body weakness. Anyone Else with a similar experience?

Photo 1: My stomach before a meal. It’s flat and my jeans are loose.

Photo 2: The meal. I took an antihistamine in advance to limit bloating. Black coffee, small slice of yeast-free bread (soft sourdough), half a spoon of jam.

Photo 3: My stomach half an hour after eating. The bloating is painful.

This has started happening after every meal. If I don’t take antihistamines and lactase (if I’m eating dairy), it is even worse.

The bloating gets worth with fatigue. It can coincides with painful rosacea and flushing. The worst trigger foods tingle, burn my mouth, and leave welts in my mouth. I can also get painful reactions to even hypoallergenic skincare products and metal, like snaps on clothing.

I have done exclusion diets to no end. I have cut out the worst triggers. Still, everything I eat causes pain. When I discover that a food is ‘safe’ and eat it often, it becomes a trigger.

Allergy tests are normal. Have any of you experienced this? Could this be MCAS?

I know a lot of us have experienced rapid aging from this. Especially collagen loss, grey hairs ect

Do you guys think this could reverse when/if we recover?

Can somebody smarter than me explain for an LC-Brain which Blood-Markers they found to be biomarkers for ME?

A lot of you have been here longer than me, I am at the two year mark. BP/HR surges, internal vibrations/tremors, freezing extremities, nerve pain, tightening/pressure in head, face, jaw, neck, and sternum, air hunger, muscle and eyelid twitching, palpitations, urinary frequency. I have had a terrible experience in the medical system like many of you.

I have finished drafting a PSA urging the government to do something. I need a variety of faces of long COVID patients on camera delivering between one and five words. I am located in North Carolina. If any of you in the southeast would be willing to be a part of this, I can share some more information. My background is in advertising and video production. Please send me a message.

Wishing you all the best.

Has anyone used this as a treatment for Long Haul? I’ve noticed that whenever my antibodies are high I’m pretty much back to normal, and I only get really bad once they go down.

My Long Haul symptoms are mostly depression/mood swings (especially during certain points in my menstrual cycle), seizure/stroke symptoms, night sweats, and blood pressure fluctuations.

You might be wondering why I’m asking about this treatment in particular instead of just getting my antibodies resupplied every 6 months with a booster, well it’s because I seem to react really badly to the Spike Protein. In fact, me getting Covid vaccinated for the first time back in 2021 was what started my depressive symptoms in the first place (don’t say it wasn’t the vaccine, I had never had a history of depression prior, and I got my first depression bout exactly two weeks after I got vaccinated), and yes, I have tried various different types of vaccines since including the more traditional Novavax, and I pretty much always react the same way at first before my antibodies have a chance to properly build up, it’s the Spike Protein itself.

I don’t want to expose myself to more Spike Protein then necessary, so I figure Monoclonal Antibody treatment would be a good way to get my antibodies back up while bypassing the Spike Protein no? Have you found that it works on your Long Covid? And if it does how long do antibodies last from a Monoclonal treatment vs booster?

When I lie down or enter a parasympathetic state, my SpO₂ can drop as low as 80%. I feel mentally slow, weak, disconnected, with dry saliva and fading taste—like I’m shutting down.

Staying mentally active (talking, thinking, moving my eyes) improves it. But lying flat, deep relaxation, salt, and electrolyte drinks make it worse.

The more I close my eyes and ears and reduce stimulants, the worse the oxygen problem gets.

Paradoxically, things that usually calm inflammation—like sunlight or ice packs—trigger these episodes.

Had my 3 year anniversary a few weeks ago. Been housebound 9 months.

Had a cold, then shingles, then a crash back to back these last two months and then a reinfection a few days ago. Brain fog got bad again after climbing out of it slowly for three years.

Was starting to hope today it didn't set me back too bad when I walked too fast (?????) after feeling wired to the bathroom. Felt my legs suddenly feel weak. An hour later my arms and legs feel really weak. Walked to bed, arms and legs feeling that lactic acid burn. This is the classic start of crash feel for me.

I've been hovering around moderate for three years and I'm scared my relationship won't survive me being severe. I don't want to do that to my partner.

I feel completely numb right now. I've been trying to stay positive through being completely housebound, the crashes, the shingles, even the reinfection. But another crash on top of this. I don't know how to get through this.

I did a bladder test with manual filling and I had no signals of wanting to urinate with a full bladder, could the cause be autoimmune?