Tips for New Sufferers

Posted by stumpedandgrumped @stumpedandgrumped, Jan 30 11:11am

I've been trying to clear what my doctors now assume is long COVID since May of 2023. Navigating treatment has been... challenging, to say the least. Below are my tips to those new to the process; here's to hoping you can avoid some of the delays and frustrations I encountered.

1) Your primary care provider is key. Your PCP is your key to getting the treatments, referrals, and advocacy you need to maximize your chances of effective treatment. If they come into appointments unprepared or have not reviewed your history prior to the appointment, they're not a good PCP. If they downplay your symptoms or refuse to issue referrals, they're not a good PCP. Do not be afraid to shop around for a PCP who is willing to advocate for you.

2) Don't take no for an answer. A key to getting a diagnosis and treatment is to rule out other illnesses and conditions. MS, Lyme, autoimmune conditions and vitamin deficiences can also cause similar symptoms. To rules those out, you are going to need tests and scans. If your doctor is reluctant to pursue tests, push them. if they're still reluctant, find another doctor.

3) Research your specialists. I've had amazing specialists who read my case history and my chronological symptoms, and terrible specialists who didn't even know why I was in their office. Look for reviews that show that they listen, don't rush, and are vested in their patients' health. Don't be afraid to ask for a different specialist if your research suggests that the one your PCP referred you to isn't vested.

4) Take lots of detailed notes. And I do mean detailed. My mother struggled with a condition for many years, and her doctors were stumped. When she was finally diagnosed (to her relief,) the doctor was able to pinpoint her issue because of something that was so minor, so seemingly unrelated, that she had never mentioned it before. So if, for example, your long COVID was prefaced by a strange full feeling in your thumb (as mine was) then document that! If your symptoms trigger after you eat certain salad dressings (as mine is) document it! At worst, it helps them work on a more general cure and at best, it might offer a clue as to effective treatments.

5) Don't be afraid to research. As frustrating as it may be, too many doctors only think about thier complicated cases during the 15-30 minutes they spend with their patients. They do not spend time reading literature, hunting down experimental treatments, or brainstorming novel approaches to treatment. As an example, my PCP, as good as she is, was unaware of the possibilities of nicotine or stellate ganglion blocks in treating long COVID. Do not be afraid to share peer reviewed studies you've found. Do not be afraid to push them to try novel things, if you're willing to experiment.

6) Consider a concierge. If your have the money to do so, consider a concierge doctor. My current PCP is a concierge, allowing me to get a response within 24 hours and an appointment within 2 days. This has greatly expedited the process of ruling out other underlying issues, and having them available to coordinate specialist appointments has greatly alleviated the frustration of calling 1,001 providers.

7) Share your experiences! The people most vested in finding a cure for long COVID are those of us who are suffering through it. If something works or worked for you, if something alleviates your symptoms even a little, that information might help someone too. So please, share and share alike!

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

@stumpedandgrumped Great List, I would add self advocate, because there is nobody waking each morning wondering how they can help you. Keep pushing and never ever give up.


@stumpedandgrumped Great List, I would add self advocate, because there is nobody waking each morning wondering how they can help you. Keep pushing and never ever give up.

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Sure, all the above is great IF you are well enough to keep notes, and food diaries, and do research etc. Not to mention pushing doctors for the tests you require. My experience has been doctors really hate it when you come in with IDEAS!
I think a lot of us out here are just barely getting through the day.
But yes, advocate (getting sick of that buzzword) for yourself as much as you can.
Good luck to all.


One thing I would like to add, try to get actual results of the tests/scans/imaging performed instead of just the physician’s summary of their interpretation of those results.

On multiple occasions I have experienced that my specialists had conflicting opinions on results.

I had a cardiac stress test performed at the hospital after admission via ER. The paperwork given to me only reported that a pulmonary nodule was found. I downloaded the actual test report from their online portal and saw that they also noted an ejection fraction of 48%, which is lower than normal and an enlarged spleen. When I showed the report to my pulmonologist she was concerned about the ejection fraction and said I needed to consult a cardiologist. I am now scheduled for additional cardiac testing.

After undergoing emergency gallbladder removal surgery, I was released with instructions to follow up with the surgeon in three weeks after being informed that the surgery went well. I later accessed the online portal and read the surgical report. To my surprise it was noted that a number of lesions were found on my liver and they had taken a biopsy to send out for testing. When I followed up with the surgeon he told me about the liver biopsy, but simply noted that tests indicated no cancer or dysplasia so all was good. He gave me a copy of the pathology report and sent me on my way. I noted that the pathology report indicated in addition to the noted inflammation found in the removed gallbladder the liver was found to have acute and chronic inflammation plus focal histiocyte aggregates with central necrosis suggestive of granulomas. Lots of big words that I didn’t understand but necrosis sure sounded ominous. I gave those results to my gastroenterologist who was certainly concerned and ordered a number of tests to determine potential autoimmune conditions and rule out viral hepatitis infection. Initial results appear to show indications of a potential autoimmune condition, however the results still need to be reviewed by my physician and discussed at my scheduled follow up.

In both of my these cases if I had just trusted the doctor’s summary of the test results as it was presented to me, I would be unaware of signs of problems occurring in my body that could potentially end up being critical, or even fatal (prognosis for untreated liver disease is often poor).


Too many doctors, too many lists all have ideas and none are congruent.
It is a treadmill just to keep up with the tons of appointments and costs.

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