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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Coronavirus: what your country is doing, how you feel & general discussion

frozenborderline

Senior Member
Messages
4,405
From the er to a new provider. but w this virus on top of normal ME/CFS I cant think and my parents aren't helping with stuff
 

Mick

Senior Member
Messages
141
Hi all,

This thread, unfortunately, got too long for me to read but here is my $0.06.

What people are going through right now is pretty much similar to what we go through every single day.
- Inability to work...
- Being afraid of what tomorrow may bring...
- Being afraid of death (I used to be afraid that I won't make it through the night)...
- Unable to sustain yourself financially...
- Unable to get help because nobody cares...
- Unable to test yourself (because there are no tests available for the general public)...
- Unable to get any social benefit...
- Unable to plan your future...
- Unable to even go outside...
- Many people (who don't understand the severity) incl. in some cases doctors are laughing at you because they think that you are exaggerating (eg. when you wear a mask)...

Obviously, there are major differences between CFS and covid disease, and it's not so nice to reduce everything to your own disease, but the consequences (shown above) of these two diseases are quite similar to each other.

So... maybe when one asks you how it feels to have CFS you might answer: it's like having covid disease. Or it's even like not having it but being scared of having it, suspecting it, trying to test yourself, get a treatment etc. ...

The most important difference is that covid will be handled quickly and taken seriously whereas CFS...
 

rainbowbluebells

Senior Member
Messages
248
I am so sorry @rainbowbluebells :(. This is a terrible situation for you. I may have to postpone an ambulant operation end of April, too, but your case sounds so much worse. I wish I could help somehow.
I fear your situation might get worse, and then what? Or does your doctor say it's "just" pain?

yes the situation may get worse. As well as the pain. No one is able to give me a straight answer :( this is the problem with coronavirus, the spill-over effects that the govts didn’t think about.. now people who need healthcare cant get it.. yet other health conditions don’t stand still either.
 

Bergkamp

Senior Member
Messages
145
Got it. Went to er, intense tachycardia, low fever, nausea, body aches, etc.. cough , shortness of breath

They gave me lots of saline. Couldn't bring heart rate down, i told them I react badly to beta blockers... they eventually gave me ativan plus the saline and tylenol, all of that worked

They did nasal swab test

But they discharged me without ativan , to a moldy airbnb to b quarantined

I definitely hate going to hospitals but think with the intense tachycardia I am glad i went even though my o2 sats turned out to be normal

Heart rate was like 156 going in, it took six hours or more for then to get it down to 100. I think the only reason they weren't total assholes to me was I brought in some medical records in the ambo, from the chiari neurosurgical center, on cci and pots diagnosis... which meant they didn't make me take the collar off and gave me lots of fluids and believed me that beta blockers didn't work

Still tachy and in lots of pain the next day ... hope I don't have to go back in... wish they prescribed me even a short term script of ativan or some pain meds as well

So sorry to hear, that sounds terrible. Hope you'll be alright soon.

How bad was your situation before this? Were you bed/housebound or somewhat active? How long were you ill with covid before you went to the ER?

sorry for all the questions
 

YippeeKi YOW !!

Senior Member
Messages
16,075
Location
Second star to the right ...
@Mick
Here's a link to two posts post in the Daily Moan thread, one of them mine, responding to someone saying much the same thing about the newbies to the ..... uh, massive benefits of this gnawing little termitatious illness.

The only benefit I can see is that we may not have to hear "Gosh, I wish I could loll about in bed all day bingeing on TV shows ...."

Our administration may be bobbling the ball wildly, beyond our worst nightmares, but a lot of "everyday" people are trying desperately to pick up the slack.

Here's the link, it's posts # 4274 and 4276 ....
https://forums.phoenixrising.me/threads/post-your-daily-moan-here.55907/page-214#post-2264782
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
How are you doing today, jimbo?

The answer I'm hoping for, not to lead the witness or anything, is "Better ..."

Thanks for asking! :) I'm fairly certain I have Covid-19 now. I haven't had a cold or a flu in 10-15 years because of the immune system upregulation I have from ME/CFS. And my ME/CFS flares and PEM never last longer than 1 day and haven't for years.

So either I caught my first cold or flu in 10-15 years during a Covid-19 pandemic or I have Covid-19. I think the odds of me not having it are extremely low. My symptoms are still mild and I think this is day 8, knock on wood! I haven't even spent any time in bed, my symptoms are that mild.

Although I'm not pushing myself to anything more than I really need to and I'm trying to take really good care of myself, so this passes as fast as possible. It looks like I'm in the 80% of cases with mild symptoms but I'm not taking that for granted. I'm going to do everything I can to make sure it don't get worse.

My sense is it won't but as the old saying goes "an ounce of prevention is worth a pound of cure".:thumbsup::) So no marathons for me until I get better!:jaw-drop::lol:

How are you doing today?
 

YippeeKi YOW !!

Senior Member
Messages
16,075
Location
Second star to the right ...
How are you doing today?
Still a little flattened, bu MUCH better than last week.

I'm spreading this rec around as much as I can, because I think it's one of the reasons I got a pretty mild case of COVID: Moducare, available on Amazon, I started DB and then myself on it about 10 months or so ago, and in spite of a lot floating phlegma in his office since then, neither of us has come down with anything until I got the Dread 19.


DB had no symptoms, hoping that means that his less stressed immune system just shrugged it off and drop-kicked it into the next county. Or anyplace replete with morons would be fine fine fine ....

Stay upward, yes?
 

Mick

Senior Member
Messages
141
I'd like to report one thing. Many stores are running out of supplements. I tried to buy quercetin at iherb and I was a little late. I usually put a few things in a basket and think what else I should buy. So I managed to add quercetin to the basket but didn't manage to make the actual purchase. Of course, I'll be trying to buy locally but...
I just got 2 phone calls from 2 local shops that they are going to cancel my order. The excuse is that all the production lines are manufacturing vitamin C, zinc and everything else that is supposed to work for coronavirus.

So that is a problem but hopefully manageable (but don't wait too long, buy now in order not to be very disappointed later).

The real problem here is: which supplements work for coronavirus. My take on this is that one should take supplements that lower inflammation and cytokines, ie. quercetin, resveratrol, etc.

Of course, I'd also take zinc, selenium, etc. but this is what I call "supplements for coronavirus 101" but I'd like to know more about more advanced approaches.

Any ideas?

EDIT: What a slow thinking... but I also buy at luckyvitamin and I've just checked if they have quercetin, too. Nope. Everything worth ordering is already backordered. And that means that it may take three months to get it - as with a few other supplements that I'm waiting for. These are unavailable since January so I assume that they are made in factories in China, hence the delay, or rather a complete production stop.
 
Last edited:
Messages
73
Location
Richmond, VA
I'd like to report one thing. Many stores are running out of supplements. I tried to buy quercetin at iherb and I was a little late. I usually put a few things in a basket and think what else I should buy. So I managed to add quercetin to the basket but didn't manage to make the actual purchase. Of course, I'll be trying to buy locally but...
I just got 2 phone calls from 2 local shops that they are going to cancel my order. The excuse is that all the production lines are manufacturing vitamin C, zinc and everything else that is supposed to work for coronavirus.

So that is a problem but hopefully manageable (but don't wait too long, buy now in order not to be very disappointed later).

The real problem here is: which supplements work for coronavirus. My take on this is that one should take supplements that lower inflammation and cytokines, ie. quercetin, resveratrol, etc.

Of course, I'd also take zinc, selenium, etc. but this is what I call "supplements for coronavirus 101" but I'd like to know more about more advanced approaches.

Any ideas?

CBD has shown efficacy in reducing lung inflammation in pneumonia in rats, however 9-delta-THC is known to exacerbate lung damage in similar models. I can attest that high potency CBD oil has been clutch for restoring airway function for me during this illness.

Yeast beta glucans (ie - "Epicor") seem to stimulate antiviral responses, however may induce cytokine release as well. They modulate gut bacteria in complex ways to alter immune function.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Still a little flattened, bu MUCH better than last week.

That seems like a good trend.:) Did I read that you first had symptoms around the 10th of March?

I'm spreading this rec around as much as I can, because I think it's one of the reasons I got a pretty mild case of COVID: Moducare, available on Amazon, I started DB and then myself on it about 10 months or so ago, and in spite of a lot floating phlegma in his office since then, neither of us has come down with anything until I got the Dread 19.

I've heard good things about Moducare. I took it several years ago for a while but don't remember how I responded.

Stay upward, yes?

That's the plan! Keep taking good care of yourself, it seems to be working!:):hug:
 
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