1. < Post-COVID Recovery & COVID-19

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.

lorivwebb | @lorivwebb | Sep 14 12:21pm
In reply to @laurajeanm "Please, please, please check into this" + (show)
@laurajeanm

Please, please, please check into this

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I cannot find one in NC. They only have them here for people that have had burns. I’ve tried.

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lorivwebb | @lorivwebb | Sep 14 12:24pm
In reply to @kellysmail2016 "Hi Janetbender, I’m Kelly. I am sorry to hear of the essential Thrombocytosis. Blood cancer, correct?..." + (show)
@kellysmail2016

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.

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I relate. Continuously getting worse over 2 years.

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lorivwebb | @lorivwebb | Sep 14 12:26pm
In reply to @friedrich "There will be national clinical trial on the use of "Pacing" to manage PEM. Here is..." + (show)
@friedrich

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.

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Looks like I may get in to this study!

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lorivwebb | @lorivwebb | Sep 14 12:30pm
In reply to @janetbender "I read Mt Sinai in nyc has a LC clinic. I don’t know which LC center..." + (show)
@janetbender

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?

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I would give fludro a good 2-4 weeks to really get In your system and drink a lot of lmnt or salt with it.

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wilsonanderson | @wilsonanderson | Sep 14 4:13pm
In reply to @jviper36 "I did a similar treatment to what is offered at AVIV. AVIV is a great place..." + (show)
@jviper36

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.

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Tell us how you get on if you rent one…I could not find anything more powerful than 2.4 atmos to hire / buy in Uk for domestic use, and although there is anecdotal evidence that the home ones even at 1.5 atmos create some relief the real evidence of benefit for LC seeme to be 4+ atmos like the Israeli one and even they then have extra oxygen variation…far to pricey for many of us sadly!

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1 reply
wilsonanderson | @wilsonanderson | Sep 14 4:26pm
In reply to @lorivwebb "I only run low and lower so fluid retention drugs like fludrocortisone help me to retain..." + (show)
@lorivwebb

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.

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My BP problem is the combined hyper/ hypo tension within any 24 hours: high BP at rest during day
but hypo on standing, so giving a specific drug that raises the low BP would then make the hyper tension even higher… Over night my BP seems ok, and what I don’t know is whether my HR suddenly rises during the day, for eg putting my coat on, indicates my BP has plummeted too, as this has only been captured on the tilt table test. I assume when I feel suddenly drained, have to sit/ lie down, that it does but I try as much as possible to make sure I catch it before I actually faint…horrid ( and embarrassing!). Luckily I have a very understanding husband by my side…

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1 reply
wilsonanderson | @wilsonanderson | Sep 14 4:31pm
In reply to @lorivwebb "I only run low and lower so fluid retention drugs like fludrocortisone help me to retain..." + (show)
@lorivwebb

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.

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Sorry I only part replied to yours…I was doing well with the extra pint of water just before I started the day, or went out, but then my Gp reinstated ( the Falls consultant who diagnosed the PH had removed) a diuretic for the hypertension…so I’m just confused by medical interference.

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lynnryan | @lynnryan | Sep 15 8:07am
In reply to @laurajeanm "Please, please, please check into this" + (show)
@laurajeanm

Please, please, please check into this

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How often do you go?

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lorivwebb | @lorivwebb | Sep 15 8:30am
In reply to @wilsonanderson "My BP problem is the combined hyper/ hypo tension within any 24 hours: high BP at..." + (show)
@wilsonanderson

My BP problem is the combined hyper/ hypo tension within any 24 hours: high BP at rest during day
but hypo on standing, so giving a specific drug that raises the low BP would then make the hyper tension even higher… Over night my BP seems ok, and what I don’t know is whether my HR suddenly rises during the day, for eg putting my coat on, indicates my BP has plummeted too, as this has only been captured on the tilt table test. I assume when I feel suddenly drained, have to sit/ lie down, that it does but I try as much as possible to make sure I catch it before I actually faint…horrid ( and embarrassing!). Luckily I have a very understanding husband by my side…

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This is a very common symptom, from what I’ve seen in the Facebook support groups and it’s what happens to me too although I don’t go too high. But my heart does this, resting it is like 45-48 then I stand and it’s 95. It’s awful. We are stuck between a rock and hard place. I believe these wild swings are what give my body this severe fatigue I experience.

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1 reply
wilsonanderson | @wilsonanderson | Sep 15 9:23am
In reply to @lorivwebb "This is a very common symptom, from what I’ve seen in the Facebook support groups and..." + (show)
@lorivwebb

This is a very common symptom, from what I’ve seen in the Facebook support groups and it’s what happens to me too although I don’t go too high. But my heart does this, resting it is like 45-48 then I stand and it’s 95. It’s awful. We are stuck between a rock and hard place. I believe these wild swings are what give my body this severe fatigue I experience.

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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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