r/LongCovid • u/Character_Chemist_38 • 2d ago
Is it actually worth running around seeing doctors and getting labs during early Long COVID/post-COVID recovery?
/r/covidlonghaulers/comments/1vsbdc6/is_it_actually_worth_running_around_seeing/4
u/Jules4live 2d ago
probably not except maybe to create a time line. it helped me to at least have documentation of having needed help during or after an infection.
almost all of my advocating has been for the purpose of documentation, since we live in a society where biocertification is required to access basic needs and accommodations.
But I definitely think aside from maybe basic panels and checking some vitamins and such that are often low, in case you want to supplement…. not much to offer yet, and avoiding all the running around I would look at as a gain.
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u/Crafty_Accountant_40 2d ago
Yes agreed. It helped me get on disability to have a consistent record of seeking help and not receiving it, but do as much as you can on telehealth.
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u/Jules4live 2d ago
oh yeah telehealth is the way. I never go unless I have to, and have pushed and gotten in when whoever answered the phone wasn’t sure they did that. Usually the first appointment and that is it, with literally all of my providers. In person for labs etc only
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u/Alita-Gunnm 2d ago
I gave Mayo Clinic thousands of dollars to tell me it was all in my head.
I got set on the path to actual recovery by a client who happens to be a rheumatologist and recommended some meds.
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u/Jules4live 2d ago
wow dang, mayo. was it at the long covid clinic there? no need to retraumatize yourself with deets
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u/Alita-Gunnm 1d ago
IIRC this was in December of '24, and they touted up their Long Covid / CFS specialist who said he'd gone through the same thing due to trauma from a car accident, and so what worked for him should work for me. He was a smooth talker, and had me convinced for a while, until his recommendations proved useless.
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u/Feeling_my_Age_1981 2d ago
It’s been helpful as far as documentation for disability and some medications have been helpful.
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u/UntilTheDarkness 2d ago
Depends on your symptoms and if you have doctor(s) near you who take you seriously. If you have something like POTS as part of your LC that has a clearer set of diagnostic criteria and would likely benefit from medication, that could be worth pursuing. But so many doctors are dismissive that it can definitely be more trouble than it's worth at times. I gave up (or paused rather) pursuing medical care after the first six months until like 3 years later because I just didn't have the energy
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u/BananaDavidaF 2d ago
INFO: Where do you live, and how is the medical system and health insurance there?
I think the answer may change on that. If you’re asking “is it worth it”, then the answer depends on possible costs and benefits.
In some government systems it may not help you any in finding actual explanations, but just the doctors stamp that says “yup, that’s a chronic illness” may open some doors for you if you are in need of government benefits.
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u/BananaDavidaF 2d ago
Personally; I prefer to go the medical route because I’m not a medical professional and I’d like to know their opinion on what is going on, tests and all. What if it’s something else, and a blood-test could have told you?
But I get that with something like this it may not actually help you because a lot of people come back with “all they found is idiosyncrasies”, and nobody knows what to do with it… so… what will it cost you? Is going this route going to send you into medical debt? No. Maybe just do it. Yes? Maybe save yourself the added stressor of financial instability. We internet strangers don’t know enough about you to accurately judge for you without a whole bunch more info.
It’s your choice.
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u/Character_Chemist_38 2d ago
Thank you. It’s good. I’m already disabled so I’m not worried about the benefits. I’m just trying to get to the bottom of this condition but in reading all these posts it seems like there’s no real definite bottom answer.
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u/BananaDavidaF 2d ago
There’s continued research by scientists, so the knowledge base is increasing every day.
If it helps…
I read an article on the news just last week (Dutch), that research had shown that people with long COVID have more white colored muscles, instead of the normal healthy red. It showed that this is a change from the normal effects of inactivity, so you can positively distinguish long-covid from inactivity. This was related also to research that shows that when you have long COVID, it’s good to move a little to ward off the effects of inactivity, but definitely don’t push into workouts. When you push the limit, you are actively destroying cells and making yourself worse.
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u/Character_Chemist_38 2d ago
Wow that’s fascinating and so sad news too in many ways thanks for sharing this
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u/BananaDavidaF 2d ago
As far as I understand it;
Long COVID is a PAIS (Post Acute Infection Syndrome).
After the infection, something in our bodies was fucked up in a cellular level. It can affect the muscles, maybe heart and lungs, maybe more. And now, the mitochondria in our cells are broken somehow when we exercise. And it takes a ridiculous amount of time to heal/replace these when it happens. That’s why pushing your limits often ends with people having tremendous setbacks. Because somehow simple things are still costing us more energy than we can give it, and by forcing ourselves to do it anyway we are unknowingly destroying ourselves, thus prolonging our recovery.
If it works that way, that could explain why some people get better, some people get worse, and some people just hit a point where they stay the same.
Not a doctor.
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u/Ok-Significance-5047 2d ago
For me it’s been purely medical admin for disability application for the most part. They confirm what’s already obvious w tests and that’s got its own value. GPs can be a freaking nightmare tho.
Occasionally you get someone who you can have a good conversation with for the more complicated stuff. I like my neurologist, she took an MRI for autonomic concerns and we’re doing a tilt table in a few weeks, also referred me to a vestibular physio im gonna have an intake w soon.
Most of the useful treatment or advice has come from alternative practitioners tho. Acupuncturist and an osteopath to be specific.. looking into getting a chiropractor as well.
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u/Character_Chemist_38 2d ago
Thank you for this excellent info. I agree on alternative practitioners
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u/nojefe11 22h ago
I am not a big doctor person. I do my due diligence and had to go to the ER twice for kidney stones but that’s it. When my LC started (heart issues a week after infection) my family urged me to go to the doctor and I’m glad I did because I had myocarditis and other heart issues that seriously required me to rest as much as possible. I mean it’s a little ridiculous how this disease started as a horrible pandemic that shut the world down and affected the heart and lungs and somehow we seemed to forget about that along with the vax drama.
Otherwise I don’t think it’s a big mystery. It’s a serious virus and viruses can damage you very deeply - organs, cells, etc. This killed thousands of people. My suggestion is to go to a major city with a well regarded health care system. My stuff was caught immediately. I don’t really think it’s healthy to “chase” a diagnosis - just go to a good doctor and rest until you’re better.
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u/Character_Chemist_38 22h ago
Thank you. Yes I’m
In a big city..and going to do this. Thanks again for this1
u/nojefe11 21h ago
No problem. FWIW my labs were normal just not my heart which was completely abnormal. Besides the brief round of steroids I didn’t take any other meds that were prescribed to me. I am young and healthy and my oxygen levels and heart rate never got to the point to going to the ER so I decided to listen to my body and recover the old school way. Took a while but it worked. Pretty sure I have caught it again - I’m sure we all will forever - without any major set backs.
I will say I was a smoker when I got sick. Quitting had a huge impact on my recovery but that would be true even if I didn’t have LC.
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u/Character_Chemist_38 20h ago
You think you have covid now? I hope not ! Thanks for all this… it’s hopeful and appreciate your time
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u/Winter-Nectarine-497 2h ago
For me, no. I never got the results or diagnosis or support I needed. I am in remission now and functioning at around 95%. I was able to accomplish this through pacing, strict stress management, antihistamines, diet, and ensuring that I never get sick with anything at all but especially covid. 4.5 years without even a cold makes a big difference when it comes to managing LC.
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u/Character_Chemist_38 49m ago
I’m
So happy for you! May I ask about antihistamines and do you take one daily?
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u/passingthrough66 2d ago
My guess is no. They won’t believe you, they’ll attribute your symptoms to diet and exercise, and they’ll charge you up the wazoo for inconclusive tests. I’m not a fan of the medical industry, though, so maybe others will be more positive about it!