Some possible answers: Diagnosed with POTS

Thanks for your tip on Yale study.

I have been to Mayo Rochester and am currently executing my recovery plan and feeling better. My Mayo Doctor has mentioned that if I don't fully recovery he is considering going nuclear - a round of Paxlovid to 'nuke' the virus. His thinking seems to align with your comments.

So glad you’re feeling better, I’m thinking if I don’t start feeling better from the management from the POTS, I might consider if possible to go the Paxlovid route.
Wishing you continued good health!

Please advise which doctors will be willing to prescribe Paxlovid. All clinical trials are already closed. Can we just ask our PCP to prescribe it? Paxlovid website says it is only to be used when you have active Covid so not yet prescribed for long covid.

Oh wow, my doctor didn’t tell me the trials were closed! Well guess I just have to suffer through this.

Thanks for the info.

I have POTS from Long COVID which attacked my autonomic nervous system causing several life long issues. I go to the Johns Hopkins Long COVID clinic where I am lucky to have a physical therapist who works specifically with POTS patients. I have been told there are not a lot out there. I wear an abdominal binder, compression socks are also an option. I can't wear compression socks due to CRPS in my right foot - extreme form of neuropathy. I have a physiatrist at UVA and a Rheumatologist. This team of doctors has been wonderful. Had many trials with other doctors and tons of medical testing before getting to this point. I am trying to be in the present with my medical issues and do what I can to alleviate/mitigate as many of the symptoms as I can. Since wearing the abdominal binder, I can sit up and stand most of the time without insane dizziness. I also do not pass out when wearing the binder. I got it on Amazon. Best thing I have bought since getting Long COVID. I have more "less horrible days" now. I still have some really bad days as the barometric pressure impacts my neuropathy and CRPS. I have been told I might not be able to fly again. At this point, going out of the house to do anything is enough. I have made a point to research each of the issues that Long COVID triggered in me instead of looking for a cure for Long COVID. I need to be able to understand what is wrong with me now and what I can do about it right now. I tend to live day to day now. It helps keep my anxiety level in check along with breathing exercises. The more anxious I get, the more my symptoms all go crazy. I am so sorry you are going through this! I would have your blood work done to see your antibody level before being boosted. My Rheumatologist did this for me. I have a very high level of antibodies. She has advised me to not get boosted. This may not be the right thing for you, but the more you know the better your doctor can help you. I am very big on being a self advocate. Especially since we got the unlucky position of being the forerunners of this. Good luck. Again I am so sorry you and all of us have this!

Will be interested if your doctor actually does this.
Thanks.

Thank you, I’m so sorry for your struggles and conditions as well. I went to my primary care doctor in October and yes he tested my antibodies levels for Covid and my results were; Covid antibodies > 2500.00 U/ml. He said that was high, I’m guessing the doctor at the Long Covid Recovery Care was suggesting doing the booster thinking I might have some remnants of the virus still in me.
So I’m doing the other management options, staying Hydrated, my blood pressure is great so he said I can try upping my sodium intake, and the compression socks and abdomen. So I guess like you I’m living day, these symptoms are frustrating and debilitating most days, but what can you do unfortunately this is the hand I’ve been dealt.
I wish you better health and a complete healing.

I really wish I had better answers. My antibodies were >2500 also. My Rheumatologist said that was high also. I don't know if your doctor is right or mine, as mine told me not to get boosted. I tend to get everything but COVID at this point. Unfortunately anything I get is overwhelming. Have you had COVID more than once?

I am learning to be the glass half full type of person. Looking at any good thing, health wise or other as great. It is not easy on some days. I have found things I can and enjoy doing in my new normal. That has helped a lot. I am working on a family history and making memory books for my Grandson for each year. Catching up on years of not watching TV. I used to be a reader but sometimes I struggle with that. My brain fog is not fun. But I am alive and a survivor.

I hope you can find something you can do and enjoy in your current normal.
I wish you better health, good luck with living in your new normal, and that we will have a better new normal at some point.

It wasn’t my primary care doctor who advised the booster (who I am going 2 talk to about this asap) this was an Internal Medicine Doctor through the Long Covid Recovery Care who just a week ago diagnosed me with POTS, and feels it was most likely brought on by COVID. Yes I had it twice, first time in February of 2021, then again in August of 2022.
For two years of going to several doctors and numerous test, doctors started thinking it was menopausal (I’m 53) with my symptoms. Which are elevated heart rate, heart arrhythmias (PVC, PAC, SVT) muscle/joint aches, lightheadedness, brain fog, digestive issues, and feeling off balance. But this Internal Medicine Doctor performed the table tilt test and diagnosed the POTS.
So I don’t know I definitely want to see what my PCP says before I get a booster.
That’s great that you are finding some things that you can enjoy, hopefully I will too, but it’s really really hard most days.

I will be 53 on Sunday. Good luck. I hear you, this is extremely difficult to live with. Please let me know what your doctor advises about the booster and how you do if you get it. I don't like that we all get different advice from doctors including ones who work with a Long COVID clinic. I have had the menopausal diagnosis too. I may be in it. Who knows, there are so many things going on with my body.