My neighbor who is dealing with significant chronic Lyme disease issues mentioned to us the other day that she sees similarities with long haulers affected by Covid and wonders if one day they will note some commonality.
She’s not meaning they have Lyme and Covid - just wondering if the body is reacting similarly. To her, Lyme has been just as puzzling and she tells us that’s normal for a portion of Lyme sufferers. It should get better post treatment, but it doesn’t and many organs/systems can be affected. There can also be good days and bad days.
The basic idea is that while the cloth or surgical masks do not provide complete protection from exposure, they do reduce viral load. There is evidence suggesting that reduced viral load is tied to more asymptomatic or mildly symptomatic cases which would potentially result in greater levels of population immunity.
This is a theory only – but definitely would be good news.
But I think this theory also means that the vaccine trials should be collecting data on activities and mask-wearing from their participants – as failure to take mask-wearing into accounts could skew the data. (If some people who receive the vaccine during the trial develop Covid, but experience mild or asymptomatic cases – it would be important to be able to tease out the extent to which mask-wearing contributed to the difference vs. the vaccine).
My daughter has dysautonomia (POTS) not caused by Covid, and so we have been following the long haulers with special interest. As a teen, she was only mildly impacted by POTS as a comorbidity of a connective tissue disorder (EDS) - right up until getting mono her second year in college. Mono seemed to flip a switch and made the dysautonomia much worse, affecting all areas of her body from digestive issues to fatigue to brain fog. It’s apparently well-known to physicians that can happen after mono, so it doesn’t seem surprising that it could happen after Covid. We have often noted that those with chronic Lyme seem to share many similarities with POTS patients. And now, Covid long haulers do as well. Having watched what our DD has endured for the past almost five years, we are doing everything in our power to not get infected with Covid.
We recently read of a clinic in Italy that seemed to be having some success by treating long-haulers with the same exercise protocol that is recommended for those with POTS. Exercise feels like the very last thing anyone with POTS wants to do, but religiously following a carefully prescribed exercise protocol from her geneticist has been what has allowed my daughter to function almost normally 75% of the time. She has learned that she has no choice but to listen to her body and just rest some days, however.
If there is any silver lining here, it’s that we are hoping that more research due to Covid long-haulers will lead to some treatment breakthroughs for the many people quietly suffering with POTS, CFS, ME and chronic Lyme.
A family member who has a positive Lyme test has been hanging out on sites for COVID long haulers. I told her to consider that her symptoms are Lyme
One theory about chronic Lyme is that the infection itself is long gone but the immune system is still reacting, and/or autoimmune problems have persisted. (I am in the latter category.)
@Cardinal Fang thanks for posting the actual diagnosis myalgic encephalomyelitis. I was lazy and then was going to do that but for some reason my post posted without me pressing “post.” Using the actual diagnostic term is one step toward respect.
In the coming years, there may be commonalities found among all these ailments. Right now we don’t even know how long the COVID long-haulers are going to be ill. It is almost the worst thing to have a vague illness that noone understands and that is often stigmatized, so very glad that these folks are getting recognition at this point.
Hoping hearts prove okay. Don’t know how many have had echocardiograms.
That’s exactly the theory for chronic fatigue/myalgic encephalomyelitis and for (some) covid-long haulers as well. The virus screws up the immune system and causes all sorts of autoimmune problems. Viruses are known to do this. Women are more likely to get autoimmune problems, for some reason.
As for hearts: Ohio State tested all their student-athletes who had tested positive for covid. Fifteen percent (!!!) of them had myocarditis (inflammation of the outside of the heart).
Hopefully they are retesting them every month to determine if it goes away. I am anxious for the studies on all the folks in the northeast that got Covid back in March and April. We now have 6 months of potential data. Hopefully there are studies going on that do these heart MRIs post Covid 1 month, post Covid 2 month, 3 m, 6m etc… We need this data.
One thing I worry about, with the post-covid myocarditis in asymptomatic people, is that myocarditis can have death as a first symptom.
So some college student unknowingly gets covid, gets myocarditis, three months later he’s out playing frisbee and he drops dead.
But I guess if this were common, we’d be hearing about it. So it’s probably not common. Still, how uncommon does it have to be before we don’t worry about it?
^I wonder if this is what happened to our former neighbor a few weeks ago. He was found by his mom slumped over at the kitchen table. 20 years old, star athlete, no known health issues.
He and his siblings played with mine from sun up to sun down. Our house was theirs and theirs ours. They were great neighbors but moved away under unusual circumstances (nothing to do with us) and we never spoke again. So I don’t feel like now is the time to see exactly what happened. News articles ruled out drugs/suicide and rumor says brain aneurysm. But I do wonder if maybe he was an asymptomatic COVID Case.
@ClassicMom98 Regardless of what that was, it’s sad and I really feel for the family.
In our circles we’ve pondered what life is going to be like 10-20-30 years down the road with healthcare if these extra health conditions affect so many and don’t improve. People are “young” enough now that they can still live with things. My guy is 28. What happens when he’s 48, 58, or 68 and the body starts to naturally decline even under the best of circumstances? Then multiply him by hundreds of thousands or more at various ages.
TWIV 663, from yesterday, is well worth a listen, for some information about the potential of herd immunity from vaccine. There are two kinds of immunity. “Sterilizing immunity” is what we think of when we hear immunity. It’s when you are exposed to the virus, but you don’t get infected because your body just sterilizes it away before it can infect your cells. (Like VGER: Ster-i-lize, ster-i-lize, imperfection.)
But there is another kind, “protective immunity,” where you get exposed to the virus, and you get infected, but you don’t get sick. You don’t get sick, but since you’re infected, you can still spread the disease.
According to Alan Dove on TWIV, the major vaccines are all going for a target of 80% of vaccine recipients being protected from serious disease from covid. The FDA said it would accept 50% protection, but all the companies are looking at worldwide distribution and, for example, the Bill and Melinda Gates Foundation demands 80%.
So they’re not going for sterilizing immunity; they’re only going for protective immunity. So then if you don’t get the vaccine, or if it doesn’t work for you, you get no protection from people who do get the vaccine. They can still get infected and they can still infect you.
(I might have protective immunity and sterilizing immunity backwards. But the point is still the same: people get infected and can infect others, but they don’t get sick.)
If they get infected and don’t get sick, I’d want to know if the numbers from the German study hold or not. Do 75+% of even asymptomatic folks have cardiac abnormalities afterward?
Let’s not forget that with many vaccines, even if it doesn’t “work for you,” and you still get the disease, you may well experience a far less serious course of illness. This is really important imo. It’s not necessarily all (completely protected) or nothing (as though you were never vaccinated).
My 38 year old next door neighbor died suddenly of a heart attack last Friday. I can’t help but wonder if it could have been post-viral myocarditis. I mean, barring a congenital defect, there doesn’t seem to be many reasons why a (seemingly) healthy 38 year old would suffer a heart attack.
I am hopeful that the research into COVID long haulers will somehow benefit those who suffer long-term effects from EBV. There was someone on one of the corona virus threads back in March who was relieved to learn her son “only” had mono, not COVID. I did not have the heart to tell her of the potential long-term effects he may face.
Do you know if they tested him for Covid? At his age, I would expect an autopsy at least to try to get answers. I’d be very interested in hearing a follow up if you hear one.
@Creekland I do not know, but I agree…I would imagine there will be an autopsy. We are in NJ where there definitely seems to be an active effort to ID covid-related deaths.
Unfortunately there are people who pass away at an early age from a undetermined heart defect. Enlarged hearts and other defects(cardiomyopathy) are not uncommon.
We don’t screen for heart defects so it does happen.
Cardiomyopathy happened before Covid, it will happen after Covid is gone.
As a nurse whose background was in critical care cardiology, I’m here to tell you that there are numerous reasons besides congenital heart problems and post-COVID myocarditis that could cause a young person to die of sudden cardiac death. Of course it’s less common than older people dying of same, but much more common than you might believe.
Of course, he absolutely could have had complications of COVID. But it’s by no means even close to being a given.
Of course there were cases before, but if it’s happening more frequently now due to it, I think the public has a right to know. It just has to be known that there is a correlation - not guessed at (nor suppressed).
If more people knew about the affects other than death they might also choose to be more responsible due to wanting to avoid those. That alone would be helpful to all and could help put the disease behind us if enough got on board.
Telling people all is well when it’s not is absurd to put it mildly.
Of course, jumping to we’re all going to die doesn’t help either. Rational thoughts based upon what truly is happening is what I want to see.
