Tips for New Sufferers

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!