Covid infection

RYO

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Just curious how many in the MECFS community have had the misfortune of getting Covid infection. What has been your reaction? How did it affect your MECFS symptoms and your overall functional status? Did you use Paxlovid and did it help you?
 

Jadzhia

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Yep, had it very recently, about 6 weeks ago now. I'm unvaccinated. My partner (triple vaxxed and healthy) also got it at the same time. We were about equally ill with it, but in slightly different ways. My worst symptom was a very, very sore throat, too painful to eat. Lost my appetite anyway so just didn't eat for about a week. Tried to sip water regularly though. I was very tired with it, and brain fogged (have been pretty clear of brain fog for the past few months). Was too shaky to be up so stayed in bed. Didn't sleep much at night due to a dry cough. Had quite a high fever (up to 103'F at one point) for a few days. Didn't take anything to lower my temp, I believe a fever should be left to do its job (unless it gets way too high of course). Was surprised I was able to 'sweat it out' - normally I can't. Woke up drenched a couple of times.

My histamine intolerance symptoms vanished temporarily (no food to set them off, I didn't even take supplements as I forgot to!) but my oxalate dumping continued. I stayed in bed for a week, then felt better quite rapidly. It's taken a few weeks for the histamine intolerance symptoms to start again. Oxalate dumping continues to be bad, but brain fog is gone. I found my gut wasn't happy for quite some time afterwards (speeded up transit time, avoiding TMI here!) but again that has now gone back to normal (too slow!). I don't feel my thyroid has been affected (don't need to take more T3) so that's a positive.

Getting Paxlovid in the UK is very difficult, no chance for me to have it so I had to cross my fingers all would be OK! I feel I got off pretty lightly. I think my immune system responded strongly enough to kick the virus out quickly and decisively.
 

Hip

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Just curious how many in the MECFS community have had the misfortune of getting Covid infection. What has been your reaction? How did it affect your MECFS symptoms and your overall functional status? Did you use Paxlovid and did it help you?
This poll asks that question. The poll results show that about one third of ME/CFS patients got permanently worse after having COVID.
 
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Just curious how many in the MECFS community have had the misfortune of getting Covid infection. What has been your reaction? How did it affect your MECFS symptoms and your overall functional status? Did you use Paxlovid and did it help you?
I've had it twice, first in this year's February and then in October. Both times it took me two weeks to recover from the virus itself and after the first time I had weird symptoms for maybe three months (food intolerances, increased dizziness). And now I caught a cold around a week after I'd gotten rid of the worst of covid. My worst covid symptoms were nausea and lightheadedness, I never got any lung symptoms which I am grateful for. I didn't really have fever either. In fact, this cold seems to be much worse than the covid (minus the nausea, I don't have that anymore). Then again I was twice vaccined against covid and I guess it could have been much worse without it.
 

RYO

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@Hip Thanks for the link. I think it’s pretty difficult to avoid infection given drop of public masking and increased transmissibility of new variants. Even home bound patients are at risk from their family and care givers despite best precautions. It’s hard to live in a bubble. But I hope researchers take the opportunity to study effect of covid on patients with pre existing MECFS. I would imagine the Bateman Horn Center has observed this issue. It would be nice to know whether a drug like Paxlovid could help MECFS patients avoid further declines. It would also be interesting to see effects of covid on already altered microbiomes, immune systems and energy metabolism.
 
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The poll results show that about one third of ME/CFS patients got permanently worse after having COVID.
Covid is only two years old for most. Permanently worse is an exaggeration.

I've experienced Long Covid after remission from ME/CFS. I trust what Bruce Patterson has said about Long Haul, it subsides in about six months. ME/CFS has no such intentions.
 

Hufsamor

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I’ve had covid, at least once (confirmed) and most likely twice.
Started on my (second or) third round of covid this weekend.
Got the covid shot three times.
We are very careful, but my husband works, and theres only so much one can do,
At least I suppose we have limited the amount of virus when we’ve been infected.

non of the rounds of covid or shots have done anything to my baceline.
(Of course, I don’t know about this last covid infection yet, but for now it doesn’t feel any worse than the prior)
 

Hip

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I trust what Bruce Patterson has said about Long Haul, it subsides in about six months.
I doubt Bruce Patterson said that. It applies to a subset of LC patients, but not all of them. Lots of people do find their LC was just post-viral fatigue, which clears up after 6 to 12 months. But for many others, it seems to turn into ME/CFS.

Same with EBV: some develop post-viral fatigue from it, but it clears up after 6 to 12 months. Others find that it never clears up, and so becomes what we call ME/CFS.

One of the big mysteries in ME/CFS is why the post-viral fatigue clears up in some, but becomes permanent in others.

Note also that SARS-CoV-1 also caused an ME/CFS-like condition which in many people has lasted for 20 years.
 
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Hip

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Permanently worse is an exaggeration.
For the purposes of that poll, a "permanent worsening of ME/CFS" is defined as worsening that has lasted at least 6 months after you had COVID.

Obviously if the worsening ME/CFS patients experience by catching COVID is just post-viral fatigue, it could clear up at the 12 month stage, because PVF can take that long to clear. And post-viral fatigue in some cases can even last 2 years. But usually PVF clears up around the 6 month mark.
 

vision blue

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Does anyone know if those who have long lasting post -viral fatigue for a few months are more likely to later develop CFS with say new assaults (covid or otherwise)
 
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My friend's brother just spent 8 days in the hospital nearly dead with his stomach/ COVID-19

I haven't heard of alot of stomach related problems with COVID but it was this guy's third round. I wonder if he now has dysautonomia or something going after digestion....
 

hapl808

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I haven't heard of alot of stomach related problems with COVID but it was this guy's third round. I wonder if he now has dysautonomia or something going after digestion....
I've talked to a few people with a lot of GI problems when they had COVID, especially pre-Omicron. No one hospitalized from that, though - just some people who didn't get tested right away because they thought it was a stomach bug or something.
 
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Yep, had it very recently, about 6 weeks ago now. I'm unvaccinated. My partner (triple vaxxed and healthy) also got it at the same time.
Totally the sme, right down to my hub, DB, having had all jabs and boosters. He brought it home as, I guess, an early Christmas present. I would have preferred chocolate and a personal assistant willing to do light cleaning.

The only diff is that I got COVID about 2 1/2 - 3 weeks ago, and still struggling a bit. DB had a worse go in terms of sore, raw, raspy throat and exhaustion, which were moderate in my case, tho withthe ME factor, it's a little harder to measure the fatigue. But the loss of appetite, the weakness, and the increased muscle aches were all mine. Also intermittent nausea, very occasional headaches and diplopia, occasional vertigo, very low temp (just barely above 100).

Didn't take anything to lower my temp, I believe a fever should be left to do its job (unless it gets way too high of course)
Wholeheartedly agree. I remember reading a science-y article prob 20 years ago or slightly more about the function of a temp, which is to raise the body temperature to the level where it begins to produce and release interferon in order to fight whatever is attacking the system. I'm sure that received wisdon has changed since, but I still hew tightly to sweating it out rather than lowering the tep with OTC meds that might make you feel more comfortable, but hobble your body's natural resposes.
 
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I've had it twice,
Me too. I was one of the "lucky" early cases, MAR 2020, and it was moderately miserable (according to the extreme examples of people going into the hospital, then on to ventilators, then off to the morgue) but absolutely incapacitating, and took me months to crawl back to base.


Like you, I've found this second round to be much less severe than the first, tho this time I had the advantage of an herbal/vit supp that really swung the difference for me.

For those interested, here's a link to my blog about my experience with ViraCon, which minimized the more uncomfortable symptoms and seems to have made the duration shorter. Sort of.

RANDOM THOUGHTS ….. Update on Impressive COVID Improvement and the ViraCon I Posted About Previously, in Oct 30 COVID Blog…
https://forums.phoenixrising.me/blo...d-about-previously-in-oct-30-covid-blog.3207/
 
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I think it’s pretty difficult to avoid infection given drop of public masking and increased transmissibility of new variants. Even home bound patients are at risk from their family and care givers despite best precautions.
I totally agree. Both my COVID infections were donated by my husband, who works in a med sized law firm, and there's just no way to avoid infection under those circumstances.


Making it even harder, you're asymptomatic initially, which is also when you're most contagious. Yippee !!!! And Yow!!!
 
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I’ve had covid, at least once (confirmed) and most likely twice.
Oh, Huf, I didn't know. Sending cyber chocolate and a hug :hug::hug::hug: :cookie::cookie: (no chocolate emoji. Damn.).....
We are very careful, but my husband works, and theres only so much one can do,
Yeah, same here. DB brought it home twice, without even knowing that he was Typhoid Mary .... almost everyone seems to be asymptomatic initially, which is also when they're most contagious ....
I don’t know about this last covid infection yet, but for now it doesn’t feel any worse than the prior)
I agree. It actually doesnt feel anywhere near as bad, but the first round was pretty miserable.


I haven't had any of the shots or boosters, but DB has had all of them, and it clearly doesnt seem to mae a whole lot of difference. He wa actually sicker than I was intially, and it took a week and a half before he was even on the outskirts of normal ...

How're you doing now?
 

hapl808

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