Newest and best long covid recovery treatments?
Has anyone had any substantial or helpful treatment for severe long covid?
Interested to hear any novel therapies being explored. At this point, I am so tired and now have pots and ME with significant symptoms for 2 years.
Looking for some hopeful ideas.
Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.
TY. This is very helpful. I’ve also applied to the study. I love right near one of the facilities and my long covid clinic already asked if I’d like to participate. I hope I’m chosen.
You are Like me with one of the more major symptoms of LC being heart/ circulation related. High Bp were my first obvious symptoms after Covid had gone back in April 2020, with high HR following…no ecg, echocardiogram, chest X-ray etc showed any obvious problem but I was finding it more and more difficult to walk ( having been an assiduous 10,000+ steps a day sort) or even small domestic tasks like standing brushing my teeth or cooking on a stove without pain and breathlessness. Gp had me on 5 hypertensive drugs, and that was it. I tried more self treatment: been swimming last 18 months 5x a week, and at same time intermittent fast 16 hours…no obvious difference, but surely done me some good , even if only mentally! Then I insisted on getting referred to a Falls specialist 2 hours drive away to get a tilt table test, thinking I self diagnosed with PoTS. The week before the test I had a complete collapse out cold in town, followed by dramatic vomiting. The test showed I had postural hypotension, after 8 mins BP had dropped from hyper to 60/40, and specialist insisted my high HR was due to it compensating for this drop…definitely not PoTS. But similar treatment, minus extra salt, with compression socks etc. Meanwhile my GP is also trying to do his bit putting back BP drugs the Falls expert had removed, and tampering with my hormone replacement on my 24 year old hypothyroid diagnosis ( insisting high HR is from ‘overmedicating on levothyroxine’), but that’s another story. It’s depressing how so few doctors seem to know about LC, mine admitted ‘wasn’t interested’ so presumably in Uk others just trying th3 self medicating etc using support of forums like this!
I had ‘postural hypotension’ diagnosed this January on a tilt test table; I thought I had self diagnosed PoTS but the Falls specialist said definitely not that heart rate went up to 135 ish as compensation as my BP plummeted from hypertensive at normal rest to 60/40 after 8 minutes standing. My GP had me on 5 hypertensive drugs, the falls expert removed two, but my GP has put me back on one…have you found a drug ( that might be available in UK) that copes with this hyper/ hypo tensive yo-yo…it’s very disabilitating and can only walk short domestic distance, or weekly with supermarket trolley ( but cannot stand at check out)?
I did a similar treatment to what is offered at AVIV. AVIV is a great place to go if you want to spend $55,000 for treatment. I found that it helped with PEM but once I stopped doing treatment I went backwards again. If you have cognitive issues it should help for the long term. I do not have cognitive issues just PEM. I am looking into renting a hyperbaric oxygen chamber.
I read Mt Sinai in nyc has a LC clinic.
I don’t know which LC center you went to, but you might want a second opinion.
I was diagnosed with POTS a month ago and Fludrocortisone hasn’t worked yet. I have a 3 mo follow-up and he mentioned if this doesn’t work, there are other meds to try.
I can’t find info on how long it takes Fludrocortisone to work. Anyone know?
I’m in the US and we have many supermarket delivery services. I love online shopping and delivery to my kitchen!
Find whatever services are available where you live and save your energy for something fun like an occasional short lunch.
Please, please, please check into this
I’m at NYC Langone LC clinic, but I also went to see a LC doctor with Montefiore Hospital. I will ask about the medication you are taking and any other medication options, and see what they say.
Thank you
Though supermarkets are not exactly my choice of shopping experience, other than swimming it’s the only trip out…bit pathetic, but better than waiting for a food delivery
I only run low and lower so fluid retention drugs like fludrocortisone help me to retain salt and volume. If you pee a lot and that causes some of your drop- desmopressin can be good. If you want to try something short acting, midodrine will push pressure, but it’s out of your system in 6 hours so no danger if you go high. It’s so hard trialing so many meds. My lows are like yours- 65/45. Awful.