When to accept permanent long covid?

Thanks Friedrich. Yes. Many factors are involved I'm sure. Hope we're on the good side of those factors. Best of luck to you. I'm reluctant to boost because of previous negative reactions and adding to my symptoms. I avoid any possible situations and always mask up if not possible. But I'm always on the fence and could change my mind. Best wishes. Gregorb

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Hi there, LC Friends: I Was smacked with Covid 12/24/19. Yep, lucky me but that’s another story. In terms of LC: I started having LC symptoms in March 2020. Like many on the string I had them all! Aftertwo years my doctor referred me to specialists that could take a look at everything that was bothering me (heart, digestion, memory, lungs, bronchial tubes, Micro clots, etc.) Not much was known about LC back then, however, everyone of the different specialists Said that to the best of their limited knowledge, it was all due to Covid. Mind you, I’d also had 5 years of positive Lyme Disease tests as well. So we were trying to battle both. In any case, here I am 5 1/2 years out and I still get PEM. It presents itself as total exhaustion the day after I try to live my old life! As well, I’ve had two flares of diverticulitis in the past six months and also had achilles tendon surgery a year ago. My doctors done a lot of research on Covid and turns out it affects just about everything so you never know what’s going to crop up. No matter how positive I am mentally how much I stay active, that bugger does not want to leave. Within a month or so I will be seeing a Long Covid specialist at Dartmouth. I’m not really certain what I’m looking for in terms of answers because I don’t really believe that anyone has any still at this late date, but I would like someone who is well schooled in LC.
My most recent challenge, as some of you who read it might know, is with the micro clots. Out of the blue, no matter what I’m doing, or have done my cherry red, lower legs have returned. Mind you, not Daily, but they show up for a few days go away for a few days and come back for a few days That actually stopped happening Four years ago. I have no idea what’s prompting their return.
Anyhow, sending so much love and healing energy to all of you.

Where are you located? There are long haul clinics throughout the USA.
I had my first visit last week; I have seen more health professionals than I care to mention as we winter elsewhere and that is where I developed LC - so also have a medical team here (gastroenterology, cardiology, pulmonology, dermatology, allergy, ENT). We have a LC clinic here (Boise) and also have a few clinics in Arizona where we winter. As there is no “test” for long covid, getting an appointment is often self-reporting. The physician (internist) at the clinic here is helpful, including his team. He said he’s willing to try a large variety of therapies. He’s even had patients that make their own LDN (crazy) as it has to be made in a compounding pharmacy and can be expensive.
I find the most difficult thing about getting medical help is feeling well enough to get to the appointment or test. LC is a barrier to getting help - feeling so ill and gathering enough energy to get out the door.

I feel for you big time. I'm too afraid to get any more COVID shots because I'm barely hanging on w/ the symptoms I currently have and don't want to risk potentially adding more problems to the mix, especially since I had acute myocarditis after shot #2.

I have a lot of empathy for you. I'm 2 years & 2 months into this.

Hi there, LC Friends: I Was smacked with Covid 12/24/19. Yep, lucky me but that’s another story. In terms of LC: I started having LC symptoms in March 2020. Like many on the string I had them all! Aftertwo years my doctor referred me to specialists that could take a look at everything that was bothering me (heart, digestion, memory, lungs, bronchial tubes, Micro clots, etc.) Not much was known about LC back then, however, everyone of the different specialists Said that to the best of their limited knowledge, it was all due to Covid. Mind you, I’d also had 5 years of positive Lyme Disease tests as well. So we were trying to battle both. In any case, here I am 5 1/2 years out and I still get PEM. It presents itself as total exhaustion the day after I try to live my old life! As well, I’ve had two flares of diverticulitis in the past six months and also had achilles tendon surgery a year ago. My doctors done a lot of research on Covid and turns out it affects just about everything so you never know what’s going to crop up. No matter how positive I am mentally how much I stay active, that bugger does not want to leave. Within a month or so I will be seeing a Long Covid specialist at Dartmouth. I’m not really certain what I’m looking for in terms of answers because I don’t really believe that anyone has any still at this late date, but I would like someone who is well schooled in LC.
My most recent challenge, as some of you who read it might know, is with the micro clots. Out of the blue, no matter what I’m doing, or have done my cherry red, lower legs have returned. Mind you, not Daily, but they show up for a few days go away for a few days and come back for a few days That actually stopped happening Four years ago. I have no idea what’s prompting their return.
Anyhow, sending so much love and healing energy to all of you.

Could someone explain micro clots, or should I just look it up? I have had what I thought was some sort of psoriasis on my lower legs, but maybe not. Longcovid for a little over 2 years. Also bright red flushing of my cheeks. I thought both were dermatological conditions, but the dermatologist’s recommendations did not help very much. Thanks…and glad that yours has abated.

After a year, my raspy wet cough is diminishing, fingers crossed. I still have fatigue, balance issues, brain fog and muscle aches. Rotating symptoms, so I will see. It's a long road and a habitual way of life for me.
It's not as horrible as it was a year ago, so I am hopeful.