Newest and best long covid recovery treatments?

Posted by lorivwebb @lorivwebb, Sep 10 3:21pm

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.

@wilsonanderson

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!

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My long covid doctor is Jordan Vaughn in Alabama (Google Medhelp and long covid). A weak lower body may be caused by iliac vein compression (may turner syndrome) per Dr. Vaughn. You may have microclots as well as so many LC patients have. Prayers for your recovery.

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@2tnt

My long covid doctor is Jordan Vaughn in Alabama (Google Medhelp and long covid). A weak lower body may be caused by iliac vein compression (may turner syndrome) per Dr. Vaughn. You may have microclots as well as so many LC patients have. Prayers for your recovery.

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I have followed the likes of Kells’ and Pretorius’ research re microclots since their earliest years of pre-/ publication etc in 2020/21, using their recommendations for Nattokinase etc when other anticlot drugs weren’t available to you…they aren’t, at least in part of Uk I live in… the various supplements did not do anything for me sadly, nor does the NHS test for microclots.

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Maybe try reaching out to Dr. Vaughn's office. He works with doctors all over the world. He treated my microclots with triple therapy.

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Triple therapy…As in 3 different drugs or drugs and op?

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@wilsonanderson

I think even with your 40 point HR swing , 45-95 bpm,
it would be classed as ‘normal’ ie under 100, in the UK, though might be causing your fatigue, it wouldn’t be treated. Though you might find self treatment for PoTS might help you. Unfortunately my Bp is ‘normal’ at rest but can easily be in 70-99 range, yet shoots up to 135 with minor ‘exercise’ eg putting coat on, a brief trip upstairs to toilet…. I haven’t found anybody on various LC forums who have, or solved, the problem of hypertensive BP at rest, but hypotension on standing, which is what seems to drive my high HR.

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This is true but this is with meds. I go to 190 without beta blocker unfortunately.

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Strangely is was the beta blocker, bisoprolol, that was the first hypertensive drug the Falls consultant removed: apparently I needed the ability for my HR to go up to compensate for the sudden low BP…I haven’t obviously noticed much difference in how I feel nor in the BP or HR without it, but I was having very vivid claustrophobic nightmares with it that was ruining my sleep. Beta blockers do seem to cause lots of side effects in members of a Heart forum I belong to (Healthunlocked, British Heart Foundation)…so although yours obviously works by halving your HR, it might be causing other symptoms now.

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Help. I started having LC last Feb 24 and am dealing with terrible headaches with tinnitus and a myriad of other symptoms. I can deal with the others but the headaches are causing me to miss work. I have them all the time. Is anyone else dealing with this or have any other advice. Multiople tests all clear and DR. finally said see a psychiatrist!

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A phase three antiviral study at University of San Diego for a broad spectrum antiviral will be starting soon. Results are looking promising. There are other ones going as well. I am just trying to stay alive until there is a treatment plan.

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@dlre95

Help. I started having LC last Feb 24 and am dealing with terrible headaches with tinnitus and a myriad of other symptoms. I can deal with the others but the headaches are causing me to miss work. I have them all the time. Is anyone else dealing with this or have any other advice. Multiople tests all clear and DR. finally said see a psychiatrist!

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Do you go to a neurologist? I went through 8 different headache medications that didn’t work until Qulipta came along. It has worked miracles for me, but it takes a couple months to kick in. Don’t give up. Something will work for you, but you have to search for it. I also have to work at keeping stress at bay. Good luck!

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@wilsonanderson

I have followed the likes of Kells’ and Pretorius’ research re microclots since their earliest years of pre-/ publication etc in 2020/21, using their recommendations for Nattokinase etc when other anticlot drugs weren’t available to you…they aren’t, at least in part of Uk I live in… the various supplements did not do anything for me sadly, nor does the NHS test for microclots.

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I’ve been on Nattokinase Streptokinase combination for several months. Right at about 6 weeks noticed a big improvement in breathing !

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