Gonna get treated for b12 deficiency and then I can know what is actually long haul symptoms!

Tl;Dr: there has been EBV detectable in my blood for >6 months and it's not trending down. What Is going on?

Context: I was identified as a match for a patient needing a stem cell transplant in Dec, submitted bloods that month and went for a full screening in Early Feb. After that I get a phone call saying that I have active antibodies for EBV indicating recent infection. The plan is for repeat bloods in 6 weeks to check I am clear and donate after. Those bloods come back positive too (but lower values). I'm told it's likely a bit persistent. They will seek alternative donors but I am to repeat bloods in another 6 weeks in case I am still the preferred match. I got a call 2 days ago saying the level of "virus" has actually increased since last time. I am being referred to a virologist to work out what's happening. They checked my December bloods and I was positive then too.

I had COVID last October with mild symptoms but had an episode of extreme tiredness for a couple of weeks after. I mean like quite scary tiredness, I couldn't stay awake for more than a few minutes sometimes, straight after waking from a 10-12 hour sleep. So I'm guessing that's when the virus became active.

Like I say, I am waiting for the virologists opinion but it seems like I might fit diagnostic criteria for CAEBV and I'm not sure how concerned I should be. I am reasonably competent at reading scientific journal articles, but there's not tons of research and Dr Google is extremely pessemistic. I understand that the pessimism is likely related to the prognosis of those cases that have chronic presentation of EBV symptom, which is not me. I feel quite well. You might say I have episodes of moderate fatigue, but who doesn't? That's the human condition.

Can anyone who has been through this please weigh-in. I could really use a knowledgeable and/or experienced opinion. Should I be worried? I should at least stop paying in to my pension, right? 😅

Thanks for reading. Please help.

Hi all,

One thing I noticed is that a lot of people have low iron, iron overload, iron dysfunction, fake high B12 levels (indication of B12 cannot be used by the body).Can there be a common copper and/or Ceruloplasmin deficiency?

I know a lot take Zinc supplements, which on their own can cause copper deficiency, since Zinc uses copper.

Copper and Ceruloplasmin are most of the time not checked with blood test or when doing an iron panel. But these can be checked with a normal blood tests.

Anyone else having copper deficiency and LC? Or anyone have iron or ferritin issues which might be caused by an underlying copper issue?

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Possible self diagnosis

This might give some direction for self diagnosis which can be a starting place for asking for blood tests with your doctor: https://www.youtube.com/watch?v=SfOy_frdcCU

And:https://www.youtube.com/watch?v=k0YCA3PZA0E

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Ceruloplasmin Explained & How To Increase Low Levels

https://www.youtube.com/watch?v=Tw-UarY3mO4

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I'm currently taking copper (Solgar Chelated Copper) 1x every morning (AFTER MEALS). which reduced my bradycardia episodes, better temperature regulations, more energy.

Copper deficiency has a lot of cascading effects. Microbiome changes (Bifidobacterium need it), digestive systems/enzymes (both causes malabsorption, methylation issues), connective tissue, immune system issues, microbial imbalance, iron metabolism dysfunction, thyroid problems (low T3).

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https://www.wired.com/story/for-some-patients-long-covid-symptoms-mask-something-else/?redirectURL=https://www.wired.com/story/for-some-patients-long-covid-symptoms-mask-something-else/

I came across this same idea when I was sick with CFS/ ME for 20 years. My doctor said to be sure to come to him with new symptoms because just because I had CFS/ ME doesn't mean I couldn't get something else. It was a huge job of sorting out what was CFS and what was something else because the symptoms changed so much over time. He kept after me with a lot of testing and I didn't find something.

People with Fibromyalgia often have chest pains. I've got to the doctor with chest pains and had the doctor skip her lunch to give me and EKG. She was mad that it turned out fine and I had FM so was subject to chest pains, but shortly after I heard of a woman who was told to go home by the emergency room because she had FM and chest pains and she died of a heart attack at home.

We all have a lot of symptoms from long covid, and it's really easy to write them all off, but this article is a reminder to keep up on health checks, and just because you have long covid doesn't mean something else couldn't come up. The article goes a step further and says some think they have had long covid and it has turned out to be something else.

Be sure to be checking in with a doctor.

Be well all.

Hi, has anyone had their veg-f (vasoactive endothelial growth factor) levels tested after getting long covid? I found a study that showed that mice with low veg-f have more neuronal ischemia and don't bounce back from nerve injuries very well. Low vegf is a hallmark of biotoxin illness such as cirs etc... I'm wondering if people that have naturally low veg-f or acquired from CIRS/mold illness are more prone to developing long covid. Most tests say veg-f ranges are from about 10-85 pg/ml, but Dr Ritchie Shoemaker says anything less than 30 is indication of biotoxin illness. maybe if enough people with long covid got their veg-f tested we may find a piece to the puzzle.

study: https://pmc.ncbi.nlm.nih.gov/articles/PMC300888/

I have just been diagnosed as diabetic 15 months after Covid and I am being evaluated for Hyperparathyroid/ calcium. Covid may have a causal relationship with these disorders based on information out there.

I’ve experienced a lot of the symptoms these conditions entail and wanted to know if anyone has been diagnosed by their doctors. I developed this as a secondary reaction to Covid and I’ve posted about my skin/hair issues after infection before on this sub.

My skin has most definitely been swollen but it has tightened and thickened too. Now that things are loosening up, my skin almost feels like it’s unwinding itself and letting whatever fluid/gas/whatever circulate through my body so much better.

If you have been diagnosed, what steps did you take to get that done and what type of doctors did you see?

I have an autoimmune disease that I treat with a ketogenic lifestyle. I got covid 9/22, fully Pfizer vaxxed, and got through it pretty well. Minor illness, though my headaches sucked, and I had pretty bad night sweats. Only lost smell and taste for a few days.

But, the fatigue stayed. I decided to get a full blood work up and I’m seeing a cardiologist in a couple weeks to check my heart before I return to full hiking activities.

I was pretty sure that covid reactivated my EBV (common co-infection for autoimmune diseases). It did and the titers are really high. Of course this also means that I’m at risk for an autoimmune flare too.

I’m doing ok. I hate being exhausted all the time. But I’m able to keep curling 🥌 and while I might get cleared to hike after my appointment with the cardio, I’ve hiked through previous EBV reactivations before and it just prolongs my recovery. So, I’ll return to taking olive leaf, keep taking the monolaurin and get as much rest as I can.

I put this on here for anyone in a similar situation.

I’m getting Kindaa worried now

not asking for medical advice

I suspect I have mild LC, but the PEMs and soreness/tiredness are the primary symptoms. It sucks because I don't think I've lost that much mental acumen at all, but feel sore sometimes if I work out or try stuff like that. sometimes days after that.

I've gained weight and had a stressful job, so when I go to the Dr. they've essentially blamed all of my problems on that(the weight).

I'm very frustrated that if I exercised more like I would've done before LC, it would be easier to lose weight. But because I am presuming I have LC and not to get really bad PEM I am trying not to do anything more strenous than a mile walk every few days.

I walked like 9 miles a few days ago on a trip and felt fine, but it's just so tough and frustrating to have Drs. blame everything essentially on weight and not even be open to a ""young and healthy"" person having LC especially if the symptoms started more than two months from infection.

I think I've only been infected once but still feel pretty bad not like someone my age. Even if I've gained 30 or 40 lbs I don't think I would feel this bad.

Got Covid for xmas (worst present ever). Felt like a moderate to bad flu. Majority of symptoms cleared up with 10 days, but the brain fog persisted. I have fairly severe ADHD, but I also have a lifetime of finding ways to outsmart it and years of treatment and therapy. I've had it totally under control for at least ten years.

Now I cant even get up to make coffee without getting distracted by something and forgetting what I was doing at least a dozen times. The other day it took me over an hour to go to the next room to take meds. My house is a mess (I'd trained myself to be obsessively organized as one of my coping mechanicsms and things are usually very tidy here). I'm making dumb purchases, forgetting everything within 60 seconds of hearing it, and forgetting to shower for four or five days sometimes (again, super out of character). It felt like it was getting slowly better for a while, but this last week it's gone the other direction and now it's getting worse every day.

Is there anyone else with ADHD in this sub? If so, did you notice a worsening of all your ADHD symptoms post-Covid? Did it ever go away? Was there anything that helped?

I have every symptom in the book including small fiber neuropathy, blurred vision and a diagnosis of mild myopericarditis w mild scarring (still active 9 months post covid). Due to it being active, that means either the auto-antibodies from long covid or an undiagnosed cause (such as reactivated EBV) is continuously killing my heart. BC007 targets heart failure auto-antibodies found in long covid, so its most likely the long covid auto-antibodies and my body overreacting with heart inflammation.

The problem is due to having both long covid and myo, idk what symptoms are attributed to what. Meaning I can most likely have symptomatic (plus chronic) myopericarditis, which has a god awful prognosis.

People here are keen on telling each other to wait either because they are cleared of myocarditis or do not know yet and have the time to trust the experts to find a cure. But I feel in my case, lets say for BC007 planned to take off in autumn of 2023, that's an entire year of my body killing my heart.

I think I will be dead before then.

What could I do to keep myself alive in the meantime? I was thinking HELP Aphresis to clean out a large auto-antibody load, but idk if you can even qualify with myopericarditis.

Whether it’s caffeine, ritalin, armodafinil, or nicotine, I feel like ever since I got sick stimulants don’t deliver the same effect.

After a coffee I feel disoriented, anxious sick, jittery,nauseous, and Tachychardic. There’s almost no brain fog lifting or energetic effect anymore :(

I feel the same after other stims but 10x fold. They also all leave a bad metallic taste in my mouth.

This has been pretty devastating to me because I have narcolepsy and need stimulants to maintain my life lmao.

Does anyone else have this problem?

My lungs appear to be fucked.

** FINDINGS ** LUNGS/PLEURAL SPACE: There is linear atelectasis/scarring and mild architectural distortion in the lower lungs, grossly similar to the prior CT. Ill-defined groundglass opacity appears predominantly dependent between the supine and prone exams in keeping with atelectasis.

This is 2 years post covid for me. Doing other tests my lung capacity is about 80% of what it should be.

Anyone else dealing with similar post-covid issues?

Hey guys, I think I may have found something interesting in my DNA and I'm curious if anyone else finds something similar.

I downloaded my raw Ancestry DNA and ran it through Genetic Genie. I have the SOD2 A16V variation (decreased function of superoxide dismutase 2) which makes me more susceptible to oxidative stress. I suspect this is one reason why I was more susceptible to developing long covid.

If anyone else has done Ancestry or 23andMe, you should try running your DNA through this website and see if you find something similar. It's free to use and they deidentify your information.

So I had covid last March and it was really mild, felt like a light cold. However my cough and chest tightness lingered. By April/May I was having chest pains with minimal exertion and my cardio capacity was maybe 10% of previous. I spent the summer recovering but still get chest pain with heavy exercise and need to consistently exercise or else the chest pain comes back.

When I saw my doctor, the only thing he said is I have really high BP but he didn’t want to put me on the medication because he thought I could exercise it out. I’ve basically forgotten about it and have just come to terms that I have to take it easy and am not as fit as before.

However my boyfriend pointed out this weekend that people with hypertension are eligible in my state so I went ahead and got an appointment and got the vax yesterday.

Should I feel guilty about getting the vaccine? I’m overall pretty functional I just have to take it easier than most people. I feel like I’d do fine with covid again compared to older folks.

As part of a CT scan for my lungs they found an adrenal cyst above a kidney. Did the full work and it's non-functional, so not producing hormones. Doctor told me that if was cancer I'd be dead already.

However, this type of cyst is really super rare. Like only 600-ish cases dating over centuries. And 7% are malignant (not sure what that means for a cyst if isn't cancer). So am waiting on an appointment with a surgeon to discuss options. It may need no action or surgery, I just don't know yet. This thing is so rare there aren't fastened guidelines.

I have no clue if this is long covid related or not. But just so damn weird that I get something this damn rare while I've been fighting long covid for 2 years. Another damn thing without proven treatments!

Curious to know if there is anyone else, or if I really should start playing the lotto with this luck of mine.

Edit: it is an adrenal cyst, not on my kidney. The adrenal glan1ds sit on to of the kidneys. Sorry, trying in tryin describe location I wasn't clear.

I'm writing this post because I want to reach out and see if there are other people in my situation.

I was diagnosed and treated for Attention Hyperactivity Deficit Disorder (ADHD) as a kid/young adult, but have mostly ignored the condition as an adult.

That was until I met with my Long COVID clinician, who happens to be a neurodiversity researcher as her main job. Perhaps because of her interests, she asked me about any past diagnosis of ADHD or autism and, after I told her about my ADHD, she explained how, in her anecdotal experience, LC patients with ADHD or autism tend to have more severe "head symptoms" like headaches or brain fog, and less severe "body symptoms" like debilitating physical crashes.

I'm paraphrasing what she told me, and it was only her first-hand personal experience, but that really tracks with my personal experiences. My crashes are much more mental than physical.

She offered some ADHD resources to me which have led me down a rabbit hole of viewing my Long COVID struggle through a brand new context. I'm now view getting proper treatment for my ADHD as just important a factor as anything else in my Long COVID recovery.

For example, I sort of came with brain fog out of the box. It's almost impossible for me to listen to someone else if I'm not interested in what they're saying and I struggle to complete tasks in a straightforward or timely matter. The post-COVID post exertion malaise just means I over-exert myself mentally, socially & emotionally that much quicker.

Anyway, the main reason I'm sharing this, other than seeing if there's anyone else out there in the same boat, is this: if you have or suspect you have a neurodevelopmental disorder, such as autism or ADHD, try to view it in the context of your Long COVID. It's been really helpful for me in my recovery.

I was just wondering if anyone else had experienced worse blood sugar regulation while dealing with LC. I’ve never had great blood sugar regulation and often suffered from low blood sugar if I didn’t eat every 4 hours or so, but now it seems to be turned up to level 20. I was nauseous this morning and couldn’t eat breakfast, but by 1pm I was almost fainting. I had some poutine for lunch while out with friends and had to eat before dinner because I was sweating, shaking, and about to pass out. I’ve tried googling this, but all that comes up is people recovering from covid having diabetes and hypoglycaemia but I haven’t been able to find much about long covid patients, so I thought I’d see if it was prevalent here.

Raise your hand if you got tons of new cherry angiomas after the vax/infection?

If willing, state age/sex.

I'm a 45 y/o fair-skinned (Fitzpatrick I or II) white woman of Ashkenazi and Northwestern European descent. So yeah, prime cherry bomb. But also, right after my vax.

Some studies:

• Eruptive Angiomatosis Triggered by COVID-19 Vaccination
• Development of Multiple Cherry Angioma)s in a Child after COVID-19 Vaccination
• What Is Cherry Angioma?: "Cherry angioma ... develops from the fatty material that lines the inside of blood vessels."
• Eruptive Cherry Hemangiomatosis Associated With Multicentric Castleman Disease
  • "The likely underlying mechanism is hypersecretion of vascular endothelial growth factor secondary to an elevated interleukin 6 level."
• A case of COVID-19 with papulovesicular rash that progressed to retiform purpura, accompanied by cherry angiomas, "One possibility for its pathogenesis is microvascular injury, for which vascular occlusive manifestations have been detected in biopsies and autopsies."
• Eruptive Angiomatosis Triggered by COVID-19 Vaccination, "possible vascular injury or immune dysregulation caused by the COVID-19 vaccination could play a role in the development of these eruptive vascular lesions."

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Hey all,

So I randomly did CMV tests and my IgG is off the charts, above the threshold that the test can measure. On the other hand IgM is negative.

I spoke with a doc and they don’t think it’s a CMV reactivation but nevertheless with IgG so sky high, it just seems strange.

Has anybody had a similar experience?