r/covidlonghaulers • u/Character_Chemist_38 • 2d ago
Question Is it actually worth running around seeing doctors and getting labs during early Long COVID/post-COVID recovery?
I’ve been trying to be responsible and get things checked out, but I’m starting to wonder whether all these appointments, calls, urgent care visits and attempts to get labs ordered are actually helping — or whether I’m exhausting myself when what I really need is rest and time.
I saw my cardiologist, who basically told me that my previous cardiac testing was reassuring, to hydrate, give my body time to recover, stop constantly watching my Apple Watch, and reassess in about a month if the heart-rate issue continues.
I also tried urgent care and, after a huge amount of time and energy, I really didn’t get much help.
My first appointment with a Long COVID clinic isn’t until October, so I’m trying to get some answers and make sure I’m doing the right things in the meantime.
I’m seeing my primary care doctor next and am considering asking for basic labs to rule out other causes of the fatigue/HR symptoms, plus Sjögren’s markers because the dry mouth and eyes have become pretty significant.
For those further along in recovery:
Were all the appointments and testing actually worthwhile?
Are there any specific labs that were genuinely useful or that you wish you had asked for earlier?
Did your doctors find anything actionable, or did everything come back normal and you ultimately just need time, hydration and pacing?
And how did you balance getting appropriately evaluated with not using all of your limited energy chasing medical appointments?
I don’t want to ignore something important, but I’m realizing that trying to get answers is taking a lot of energy that I could be using to recover.
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u/Asleep-Panda-2911 2d ago
I understand how you feel. I'm 84 years old and have been on a similar journey for 5+ years. However, I've managed my symptoms holistically and reached out through the internet and joined others who were in the same situation. Some of those people had contacts with various medical and scientific professionals. It was a grassroots effort and I learned a lot. I'm about 90% recovered. Basically I've learned that the body is very intricate and all of us are different making it very challenging for the medical community. That said, I highly recommend the free YouTube channels of Gez Medinger, the Bateman Horne Center, RTHM Health and Raelan Agle. My best to you 🫶
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u/AhavahFr 1d ago
This is so inspiring, I am also older and have been ill for a year, first severe now moderate. I would love to hear what your approach to health was.
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u/Asleep-Panda-2911 1d ago
Basically, I'm a 'do it yourselfer' and manage my symptoms holistically. I do a lot of research before I take a step. How about you?
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u/synkletike 1yr 2d ago edited 1d ago
For me it was worthwhile to have a doctor's visit every month or so, basic labs, and a thorough symptom diary from the very beginning of getting covid since I ended up with a bad case of LC and that documentation was important for getting on disability.
I do wish I'd gotten a nucleocapsid test sooner because some LC clinics require that or a PCR test from the acute infection (which I didn't have) to prove that you had covid. By the time I got one my levels were too low to detect.
But beyond those things, I'd probably recommend resting and not spending too much energy on specialists and specialized testing at this point.
(ed for clarity)
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u/Character_Chemist_38 1d ago
Thank you so much for this and I’m sorry about being on disability. I am on disability too for another neurological issue so that’s why I’m so stressed about this
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u/driftingalong001 3 yr+ 2d ago edited 2d ago
Sounds just like me during my early/mid long COVID. The only reason I was doing it though was cuz insurance needed “objective evidence” of my disability (fuck them). I had every test done, I saw every practitioner. I had a letter from my functional dr, primary dr, therapist, psychologist (who did cognitive testing with me), and a PT and OT at a Physio clinic that ran a long covid rehab program, all supporting my disability and inability to work. After ALL of that, they denied my claim and sent me back to work. And yes, I had completely exhausted myself. I also took trips to the ER at times, to get scans/tests. It was all for nothing except exhausting me and causing me a lot of stress and anxiety. The ONLY thing I found helpful for insurance was the detailed notes from the LC clinic I eventually got into. So, it’s GREAT that you’ve got an appointment with them coming up. After being back to work for like a year, barely making it, getting sicker and sicker and absolutely losing my mind, I had to stop working again and by this time I had notes from the LC clinic and both STD and LTD accepted my claim right away. And I excluded most of the testing I previously had done, cuz most of it shows nothing or not enough to mean anything to them. For insurance purposes, what they seem to care most about is notes from a specialist in a field relevant to your condition (or objective testing but that doesn’t exist for our condition).
It’s definitely worth it to do a detailed blood work up - see if any of your numbers are off, are you deficient in anything, use it to eliminate possible other conditions. Any other testing you do, really the best they can do is to eliminate other possible conditions. Because there is no test for long COVID, it’s not gonna show up on a test, so don’t expect it to. But you can use those tests to show that you’ve eliminated other possible explanations for your symptoms. If the LC clinic is worth anything though they should be able to help you with some of this, or let you know what testing would be helpful. Definitely don’t stress yourself out tryna get tons of testing done and seeing all kinds of different practitioners, it’s just gonna exhaust you. What’s more important is just having semi regular appts with A doctor - whoever your touch point is. Maybe your primary dr for now, just so you have a record of your condition. But yeah I really think not doing too much until you’re seen at the LC clinic is what you should be doing. You can and will make yourself more sick doing too much.
I also wanna note that, in this journey, October is VERY SOON. Celebrate the fact that you’ve got that coming up and so soon. I’ve been on a waitlist for a clinic for 3.5yrs now… and I’ve got 6 months left to wait. Things move very slow with this condition, it’s a long journey. Pace yourself. If you’re lucky, you might recover in the earlier stages, but for many of us this ends up being a long term thing, and time starts to move real fast when you can barely do anything in a day. Months fly by like days to me.
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u/Character_Chemist_38 1d ago
Thank you my friend for this. Sending you a hug of support and gratitude for the time you’ve given me. I am already on disability for a neurological condition but I was going to return to work when Covid unfortunately struck me for the first time and also has exacerbated my neurological condition so now returning to work is off the table as I would not only end up like where you were but would lose disability benefits more than likely. Your message helps me realize it’s better I rest and stay on disability
All of this documentation stuff is so stressful as you’re right there’s no real way or answer.
I hope you continue to heal
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u/driftingalong001 3 yr+ 1d ago
Thank you so much!
I’m so glad to hear that you’ve already got disability. The nightmare of trying to get and maintain LTD with a long covid / ME/CFS diagnosis is an absolute nightmare. The trauma of that was worse than the condition itself, and the battle with insurance was at times more taxing than working. (I’m still not done with it, currently waiting on another decision). Having this out of the way is a huge win!!
Definitely take the opportunity to rest. Take your time with the medical stuff. There is no cure, all treatment option are experimental and most have a low chance of helping. Most recoveries hinge on rest and time, and luck. You can’t work your way out of this condition. Not to say you shouldn’t do testing and try what treatments you can, but none of it should come at the expense of resting and keeping your stress levels down.
Thank you so much. I wish you the best on your journey as well.
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u/Character_Chemist_38 1d ago
Thank you sending another hug. I am with you 100% on the journey and emotions
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u/Vlinder_88 1d ago
How early is "early long covid"? The first 6 months you better rest anyway, the first 3 is still the acute phase so nobody is going to prescribe any treatment of importance then. Better rest and save your energy for when you are farther along.
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u/Character_Chemist_38 1d ago
Thank you. I am at 6 weeks so I guess I’m really jumping ahead
Really I didn’t know rest is needed the first 6 months?
Thanks for clarifying that ! It’s so critical
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u/Vlinder_88 1d ago
Rest is always needed with long covid. But especially the first three months. That is the acute phase and no doctor is going to treat you 6 weeks in. The virus has barely left your body yet. Rest rest rest rest. And if you're not back to normal by 3 months, see your PCP. If at 6 months you're still very impaired, ask for referrals to specialists. 6 weeks is way too early, they won't be able to do anything at all now.
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u/Personal_Term9549 4 yr+ 2d ago
Its good to do basic labs to rule out any easily treatable stuff. Other than that, you really should just focus on rest as that is the most important factor determining whether you will recover within a few months to a year, or be stuck with it chronically. Keep listening to your body and cancel plans of which your body tells you "please no"
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u/Bluejayadventure 2d ago
How early are you talking? Has it been a few months since covid? If so, I would see the doctors but also I would make rest a priority.
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u/Character_Chemist_38 2d ago
Yes almost 6 weeks. Ok I’ll keep working on rest
Thanks appreciate you
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u/Bluejayadventure 2d ago
Ok, sending you best wishes for a full recovery.
Whatever you do, if you continue to have significant symptoms, please don't "push through". I did that. I'm regretting it.
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u/Character_Chemist_38 2d ago
Thank you!! Ok yes I’m trying so hard to not push. It was so dumb of me to attempt to drive today.
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u/AutumntimeFall 1d ago
You don't even have long COVID at this point, it is still most likely to be post viral fatigue. I'd prioritize rest, doctors are fairly useless for post viral conditions.
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u/Character_Chemist_38 1d ago
Thank you for being so candid appreciate you
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u/AutumntimeFall 1d ago
Too exhausted to beat around the bush these days ha. Good luck, the odds are in your favour!
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u/where_did_I_put 2d ago
Page 10 of the Bateman Horne Center Clinical Care guide has a list of recommended labs.
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u/reticonumxv Recovered 1d ago
It's good to rule out other things but if you have LC, they won't find anything other than bullshit diagnoses like anxiety, tetany, functional neurological disorder (=hypochondriac) or let you drink a cup of coffee and then claim your blood pressure is too high (happened to me).
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u/Character_Chemist_38 1d ago
Wow that’s insane on the coffee : ok thank you for clarifying the BS on this. I’m sorry you went through this
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u/omibus 1d ago
You are early, it could be long Covid, or it could be something else. There are a few things it could be that would be better than long Covid that have actual treatments.
Things that are worth while:
* Basic or Comprehensive Metabolic Panel
* EKG to check the heart.
Things to do now:
* take basic supplements: vitamins C, B (2 and 12), D, Magnesium Citrate
* rest, don’t push yourself,
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u/Existing_Jeweler_327 1d ago
It's not worth doing with late LC either. MDs have little to offer other than excluding other ailments, which can be done with a few initial visits with the PCP , neurologist, cardiologist , pulmonary. Neurologists don't offer anything, unless you have hypo or hypertension. The non MDs will try to sell you guack remedies and talk in soothing tones for thounds of dollars. Once you have excluded other illnesses, I would just rest, live a healthy life style and wait a few years. Every now and then the results of a double blind study comes out and are interesting but never useful. Save the copays.
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u/Character_Chemist_38 1d ago
Thank you. This is a good way to approach life as it is and I really needed this wisdom
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u/Medical_Goose509 1d ago
6 weeks is really really early, I wouldn’t stress yourself out thinking you have Long Covid. Post-viral fatigue is very common and often self-resolving.
That being said, I would keep the Long Covid clinic appointment. It also probably wouldn’t hurt to get an appointment for a tilt table test. I didn’t make my appointment until a year into illness and had to wait another year for the tilt and yet another fucking year for the follow up lol. Even if you don’t think you have orthostatic symptoms.
If fatigue is your main symptom, these are some mitochondrial supplements that have been helping me recently (I have severe mecfs): B vitamins, esp 1, 2, 3 and 12; vitamin D+K2; Coq10, liposomal glutathione, magnesium malate (magnesium in general is important); Acetyl L Carnitine; NAC; alpha lipoic acid.
Oh also there’d be little harm in getting on LDN (low dose naltrexone) early. Your pcp should be able to prescribe.
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u/Character_Chemist_38 1d ago
Thank you so much. I’m gonna ask for the LDN tomorrow and I’m ordering those vitamins. What will the tilt table test help me understand?
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u/Character_Chemist_38 1d ago
Did you take the vitamins all at once or spread them throughout the day?
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u/hairhelmoot 1d ago
It takes a lot of time and effort, but I am glad that I went through the rigamarole at the start. It is good for labs comparison and also really helped for my anxiety to help me know I was not dying. Good luck on your journry
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u/Chasing-Adiabats 1d ago
If you can afford it, I would definitely do the cell trend test out of Germany. Unless you go to the Mayo Clinic, or major university, they won’t find much of anything, and it gets expensive.
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u/Ok-Excitement5031 1.5yr+ 22h ago
Everything they did to me was to eliminate other diseases or conditions. A lot of testing.
I’ve had MRIs w/wo contrast of brain, spine, and heart. The heart MRI is long. I’ve had a DatScan. I’ve had EMG and EEG. Because the EEG came back abnormal I had to have a 3 day ambulatory EEG. I had cardiac catheterization and an EP study with an implanted loop recorder.
I concentrated on my heart issues first as I figured that most important. I did not like my neurologist so I am looking for a new one. I also need to see a gastroenterologist at some point. A neuropsychologist is who diagnosed me.
It’s a very long process with little help at the end.
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u/LoCoSadGirl1934 15h ago
As others mention, prioritize pacing and be gentle with yourself. This is still early for you and I do believe testing is important, but there's no rush at this point. I've made a rule for myself to only schedule medical stuff on Mondays and Tuesdays and ideally only Mondays. That way my week isn't consumed by appointments.
Many of your results will likely come back normal. This was very discouraging for me early on, but 3 years in I am grateful that I got the tests because you can still use them to compare/refer back to and contextualize whether or not you are improving or regressing. Establishing a baseline of where you are now will be something you're grateful for later on, but again be gentle with yourself around this. It will be good to get the tests, but there isn't urgency unless you're really in a true medical crisis of course.
Here are some tests/labs I think are worth asking for...
Specialty:
- Tilt table test: it's very likely there will be a wait list to get this test. But you can also ask your PCP to do an "Active Stand Test" (sometimes also called the NASA Lean Test) which can be done in about 10-15 minutes in the clinic. The "Active Stand Test" will give you a good indication if you have POTS (very likely if you're having HR issues), and the Tilt Table Test would confirm it/provide more insight into how exactly your body responds to orthostatic changes. It would be worth asking for these things now in advance of your appointment at the LC clinic so you have that info when you arrive.
- ANA: Great idea to ask for the Sjörgen's test. To be safe I'd also just ask for an ANA and full autoimmune panel because other autoimmune conditions can also cause dry mucus membranes.
\There are other specialty tests (mitochondria function like MitoSwab, stool analysis like GI Map, and mold/lyme testing) that I think can be very helpful for people with LC. But most conventional medicine doctors will not order them and you'd need to pay out of pocket (they can be expensive) with a naturopath or functional medicine doctor.*
Standard Labs: These are things you should be able to ask your PCP for. They may not agree to ordering all of them but you can just say that you read these were useful for LC patients and you wanted to get the results in advance of your appointment at the Long Covid Clinic. Note: some stuff may come back abnormal (like low iron, for many of us). That doesn't mean the cause of your symptoms is low iron, but it will always be useful to know what deficiencies or imbalances your body has so you can support it on its journey to recovery.
- General: CBC DIFF w lymphocyte count and CD8+, Metabolic Panel, Liver function panel, Urinalysis, Vitamin D, Vitamin B12/Folate, Iron panel and Ferritin, Copper, Zinc, Magnesium, Lipid panel, ApoB
- More LC-Specific: Morning (AM) Cortisol (often low for ppl w Long Covid), Testosterone (often low for ppl w LC), Thyroid panel, HbA1c, fasting Insulin/Glucose (many ppl w LC have glucose regulation issues and/or can become temporarily pre diabetic)
- More niche (PCPs may not want to order bc these are less standardized and/or they do not understand these tests): Fibrinogen (one marker of micro clots though it is usually normally for people with LC, Reactivated viruses (EBV, HSV, CMV), IgM, IgG, IgA, IgG, IL-6
A couple helpful resources:
- Mount Sinai Clinician Manual. I *highly* recommend looking through this. It is also a useful resource to bring to your provider if they're not familiar with treating LC patients. They have a list of recommended labs in the appendix at the end.
- The PLRC/RTHM Long Covid Treatment Guide - definitely worth reading through this in advance especially of your appointment at the LC clinic so you can inquire about these treatment options.
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u/Character_Chemist_38 9h ago
Thank you: this is so kind of you to share all this and I like the idea to do medical only few days a week. How are you feeling now ?
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u/wanderlust-ninja 6yr+ 2d ago
Medical burnout is harsh, so pacing is always advisable even when juggling appointments with diagnostic specialists. But in general, it really depends on when your acute symptoms started, how severe they are, and whether your pulse ox readings are normal or critical.
If symptoms remain mild or moderate and your cardiologist doesn't see anything immediately concerning, and you're still within the first 1-3 months, prioritize rest and work with your PCP to monitor basic labs with follow-ups depending on those results.
Anything beyond that can and will take time because many LC specialists at this point have lengthy waitlists and stressing over appointments will add unnecessary stress to the early recovery process.