Newest and best long covid recovery treatments?

I had long Covid which caused ET, essential Thrombocytosis, and then POTS.
I have different meds for each condition with applicable vitamins.

POTS is a recent diagnosis and after a few weeks taking Fludrocortisone I have only felt side effects of the drug - not helping heart rate or balance or changes in pressure yet. I see my doc in a month and hope to feel better.

My cat is very happy I’m around most of the time.

Hi Janetbender, I’m Kelly.
I am sorry to hear of the
essential Thrombocytosis. Blood cancer, correct? Covid has been awful for many of us. If you don’t mind me asking, what were your symptoms and what type of Dr diagnosed it? I have seen a few people mention POTS as well. My cardiologist, on my first visit to her, said POTS and handed me a piece of paper with info on it about POTS, and was done with me. I fired her then and there. She never even tested me. My heart rate is raised from any type of movement. Even showering. I’m fighting to get any true diagnosis besides long Covid. Treating me for ME (like fibromyalgia) with new drugs. Take 18 medications now from long Covid. Do they have you on all kinds of meds? Is the Fludrocortisone for Congenital adrenal hyperplasia? I am wanting to compile a list of diagnoses from people to get an idea if any are a like or a pattern. I’m in limbo. I have all symptoms leading to CHF (congestive heart failure) but my tests say differently. Or possibly PH (pulmonary hypertension) but I’m on low end so the true test there is right heart cath. Now thinking Cushings Syndrome and waiting for an Endocrinologist appointment my new cardiologist is sending me too. Meanwhile I get worse with no reasoning for it. Trying to see what others are experiencing. All chime in. Want to try and see what others experience.

ET was the easiest to diagnose. I saw a cardiologist for the first time to just get baseline readings for the future,

Platelet count should be between 150,000 - 400,000. Mine was 1.2 million. The cardiologist sent me to a hematologist / oncologist who prescribed hydroxyurea with vitamins. I take 500mg daily which is a low dose. My platelets slowly went down- there are side effects to the drug.

I also had a racing heart standing or sitting and my pressure changed 30 points when I stood up.
I returned to the cardiologist for a checkup and he diagnosed POTS. I’ve taken Fludrocortisone a few weeks (with more vitamins) and it hasn’t worked yet.

There are several drugs for each condition and depending what else you take you might take a diff drug.

Research each condition on Mayo Clinic’s website.

I’ve had pots for a very long time. Fludrocortisone helps push my pressure quickly but I need a beta blocker for my heart rate. Unfortunately, after covid my beta blocker stopped working effectively and I’ve yet to find a med that helps the extreme Brady/tachy. I’m very well researched in pots though if you need any advice. I’m happy to help. Not everyone is as hard as me with stubborn symptom mgmt.

There is a treatment which is beyond the financial means of most but I’ll mention it - the Aviv Clinic . They have a protocol centered on HBOT and the research of a Dr Efrati , an Israeli neurologist and researcher . The results are substantial and the benefits sustain for more than a year or more . Search youtube testimonials of Aviv patients . There is one in Florida and the other is in Dubai - world class

I take low-dose naltrexone (current dosage is 2 mg/day), and I have found it to be very effective for the muscle aches and pains that I was having. It certainly isn’t a cure and doesn’t help with my fatigue or post-exertional malaise, but I am better with it than I was without it.

May I ask how you are working through the post exertions malaise? This is a new symptom for me and I’m finding it very challenging to understand and manage.

Honestly, I rest as much as possible. I can’t work and am in the process of trying to get long term disability benefits through my employer, so that takes much of the pressure off and gives me the ability to rest whenever I need. I also have a very supportive partner who picks up a tremendous amount of slack at home in regard to cooking and cleaning. If I had to work or didn’t have a partner, I don’t know what I would do. I imagine that is how many people get very severe, because I think pushing when your body says no makes everything so much worse.

Hi everyone,
My journey started back in 2021, after having a very mild case of Covid, with multiple symptoms that really didn’t arise until about five months later, with heart issues being the most troubling. Elevated heart rate just sitting down, irregular heartbeats (pvc’s, svt’s and pac’s). Went to two different Cardiologist, heart disease and an electrophysiology. Had a stress test, echocardiograms, heart monitors, C Scans, Transesophageal procedure, even had an EP study performed, didn’t reveal anything serious (their words), just the above mentioned irregularities. I was told by both doctors that the only test left was a table tilt test but even if the results are positive there is no cure only management. So we tried a few different beta blockers, it did help the elevated heart rate but not the arrhythmias. And both told me I can take them as needed but it’s not necessary or a requirement to take them based on my test results.
Some months later I found on my own a LC Clinic here in NYC, my LC doctor performed a “simulation” of a tilt table test, meaning he had me lay down flat with a blood pressure and heart rate monitors for 10 minutes, then had me stand up and said he believes it’s Dysautonomia (POTS) he too said I can only manage the symptoms; lots of water and salt, compression garments but that’s about it. I don’t feel he was being dismissive just straight to the point. After three years I’m at the point of trying to accept what is. Of course I hope I get better but I’m also realizing that this condition/illness is unpredictable I don’t know what to expect. I try to push through the bad days and enjoy the not so bad ones.
Sending positive thoughts and prayers to all for complete recovery and happier days.

There will be national clinical trial on the use of "Pacing" to manage PEM. Here is a link to the announcement of the trial:
https://trials.recovercovid.org/documents/RECOVER_ENERGIZE_Brochure_StructuredPacing_V1.0.pdf
Here is a link to a website with instructions on how to do "Pacing."
https://longcovid.physio/pacing
The study site where I'm in the RECOVER-VITAL clinical trial has applied to become a site for the RECOVER clinical trial of Structured Pacing. (Endeavor Health, Evanston, IL) I hope to participate in that study. In the meantime, I'm keeping a log of my periods of Activity and periods of Rest, and getting increasingly sensitive to internal sensations indicating when I need to end a period of Activity, and turn to Rest.

Also, see the comments under the Posting on this website about the RECOVER clinical trial.