Does anyone know of anyone whom has gotten over Long Covid Condition

Posted by jimmiep @jimmiep, Jul 30, 2023

We are all hearing of our issues that don't seem to get any better BUT, does anyone know of someone who has beat this bug. My wife made the comment that those who beat it probably don't communicate hear on this sight any more. If someone has found a way to beat this thing please let the rest of us know how you did it.
I've only been dealing with this for 7 months now and I am exhausted with it. Hearing that some have been suffering with this for 2 1/2 to 3 years is dis-heartening for sure. I really feel bad for you folks. I'd be a pot head by now. At least I'd be able to control the way I feel. I'm starting to think that way. Good luck everyone.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

@whoesonfirst

Hello Everyone,
I contracted Covid 19 in January 2021, and I have not been healthy since. All of the things I read here, I have same systems. Headaches, my muscles ache, joints aches, my brain is scrambles I can't spell simple words. I struggle while speaking, I can't get the right words out of my brain to come out of my mouth. My memory is currently playing hide n seek, because I can't find it. I get like wobbly, like I need a V-8. My hands shake, coffee spilling out of my cup shaky. I drop things all the time. At times I have shortness of breath and use an inhaler, I had a Gran Mal seizure, I am tired all the time - so tired. I have a hard time focusing on pretty much anything. It awful. I've tried Eastern & Western methods, acupuncture, vitamins, iv's. I meditate almost everyday. I also have a stationary bike. I do the 8 or 10 minutes of beginner's type workouts or Pilates, still struggling to find my sweet spot. I keep my inhaler close. I have been trying to kick Long Covid out of my mind this is just going to go away. I can have a "Normal workout" and a "Normal day" , I want to make dinner for my family, make a bed, vacuum, drive.... My body tolerates very little, or at least compared to pre-covid. I have blacked out so many times, I have broken ribs, broken foot, broken ankle, gave myself whiplash from walking into a wall. I currently have a rotator cuff injury from falling on it so much. my blood pressure is fine. I was tested for POTS. They can find nothing wrong.
I am a positive person, and I am happy to read all of your stories!!! They inspire me. I am in California. I got up about 7am, it is now 10:51am, 2 cups of coffee, 1 Adderall and an 8 minutes arms YouTube video. I can barely keep my eye's open.
Thank you Mayo for providing these platforms for us to share and discuss what we are going through.
Whoesonfirst

Jump to this post

I’m no doctor or scientist, so here’s my amateur understanding. I have read everything I can find on Long Covid, and many see it as a disease of the mitochondria at the cell level — the virus has damaged them so our cells can’t produce the energy levels we need. That’s why the exhaustion and the overall incapacitation, and why pacing is so critical — push beyond the energy our cells have and there is a toxic build-up at the cellular level which makes us feel worse (not better) and energy levels get/stay low — and pushing too much brought me days of needing to recover to even get back to where I was before the energy crash with accompanying aches, pains, and limits as if I had been hit by a truck. When I worked from that premise, I accepted I could not go beyond my current energy limits without a crash and burn. The more I paced, the more over time I could do and the fewer/milder the crashes. I fuel by lying down and mini-naps, not coffee. It’s been a long recovery but the trend has been uphill and healing lasting. Hope this helps. Long Covid has been a bear and a shock beyond anything I expected life to bring my way. But I have hopes to heal completely.

REPLY

Found this article helpful to understand the complexity of Long Covid and all we don’t know. https://hms.harvard.edu/news/most-important-question-about-long-covid

REPLY

It has been 5 months and I've recovered from all but the fatigue. I suspect the fatigue is from hypothyroidism (covid can hit there as well). I've had that for 25 years but my hypothyroid symptoms are worse post covid. Unfortunately the doctors won't believe me because my TSH is 2.76 (normal range 0.4-5.5). TSH is thyroid stimulating hormone. Closer to 0.4 is higher metabolism and 5.5 is low energy.

REPLY
@batwood23

Hi! I had Long Covid for 9 months. It was severe, horrible. I’ve been an RN for 20+ years. I read a lot of scientific papers online- 2 of which recommended certain supplements & 1 that said a course of Paxlovid helped in a lot of cases.
1st tried supplements in one study- no real results
2nd I tried a supplement ( that I had to get from Italy) as it is used widely in Europe but not available in US yet). Helped a bit- gave me 1 or 2 pretty good days a week, no more.
3rd- my last hope- was able to get a prescription from a Teledoc for Paxlovid-a course of 5 days (2 different tablets twice a day)
Evening of 3rd day I actually really felt something physically happening & the same the next day & that evening I felt it was gone. Took me about 3 weeks to realize it was gone & not coming back
That was mid-May this year
I am back to my full life- only lasting change left in my body is increased sweating .
It truly was a miracle for me! Plus. Tho it had a price tag of $525 it was free at Walgreens thru the Federal government-
I am grateful every morning when I wake up without the thing that cost me 9 months of my life
I hope my info helps u, I wish u the best & a cure

Jump to this post

This is wonderful to hear! So happy for you. Can you briefly describe what symptoms you had. Seems there are several "types" of long covid and I am wondering if I should try Paxlovid for my type.
Thank you.

REPLY

I have been to dozens of doctors and alternative treatments over the last sixteen months. Nothing has helped me, and my symptoms continue to worsen. I am a bit different in that my problems started six weeks after Covid “recovery”. My ears got clogged and stuffy after an airplane flight, and have never cleared. After that I’ve had cascading symptoms. I now have tinnitus, hyperacusis, blurred vision, disrupted digestion with constipation.
I am only offered hearing aids, cataract surgery and SSRI or SNRI treatment. I now wear hearing aids and I had cataract surgery but neither has fixed my problems. I am dizzy and disoriented. I feel like I’m drunk without any of the pleasant side effects you might associate with drunkenness. I also have the full body zingers on occasion. I cannot participate in life any longer. I am mostly housebound. This life is not worth living and I am about to give up. I’ve tried a variety of SSRI and SNRI but I do not tolerate the side effects, and doctors get annoyed when you won’t take things that make you worse.
I’m interested if anybody else has had my symptoms and if they’ve found any help.

REPLY

Your need for meds/ treatment are same as mine. Doctors have no meds to recommend and they vla there are no meds for Neuropathy- which is the closest diagnosis's I’ve received! It’s been over a year Of pain now! Are you okay?
RSVP any ideas?!😇🙏

REPLY
@felicia2

Your need for meds/ treatment are same as mine. Doctors have no meds to recommend and they vla there are no meds for Neuropathy- which is the closest diagnosis's I’ve received! It’s been over a year Of pain now! Are you okay?
RSVP any ideas?!😇🙏

Jump to this post

Hi Felicia,
My PCP prescribes Klonopin for me. I take it sparingly because I don’t want to build tolerance. Most doctors these days will not prescribe sedative but it’s the only thing that gives me any relief.
I take all sorts of vitamins and supplements that you see mentioned by others. I haven’t found anything helps me. The virus invading the ears seems to be a less common occurrence. It truly affects everything. I am dizzy all the time, I feel pressure in my head and ears, noise and light sensitivity. Now my eyes seem to be involved too.
A Neurologist diagnosed me with Ocular Migraine, but migraine meds have not helped me. Wrong diagnosis.
I am currently trying Microcurrent Neurofeedback. I have had ten sessions with no change. I will continue awhile longer and report any improvement. I am waitlisted for a long Covid Clinic in my area. No idea if I’ll ever get in. Doctors who are trying to help are overwhelmed. Please let me know if you find any answers.
Thanks for your reply. These symptoms are different from most it seems.

REPLY
@stanwink

This is wonderful to hear! So happy for you. Can you briefly describe what symptoms you had. Seems there are several "types" of long covid and I am wondering if I should try Paxlovid for my type.
Thank you.

Jump to this post

I’m so happy stanwink had a good result with Paxlovid. I also managed to get a prescription online. Unfortunately for me I guess just too much time had passed since the infection (about 8 months). My understanding is that in the study groups Paxlovid is given for at least 15 days. Three times the length given (five days) for an early detection.
Anyway I’m so glad it worked for you.
Acyclovir is another antiviral that works for some people. Many people have it in the medicine cabinet already for herpes outbreaks. It’s worth a try if you have some. I tried that too, and it did not work for me. It is being studied for long Covid treatment. Protocol starts at 400mg 2Xper day, then 3x etc.
This is an older antiviral and some GPS might help you try. It’s worth a shot.
Good luck everybody.

REPLY
@dloos

Hi Felicia,
My PCP prescribes Klonopin for me. I take it sparingly because I don’t want to build tolerance. Most doctors these days will not prescribe sedative but it’s the only thing that gives me any relief.
I take all sorts of vitamins and supplements that you see mentioned by others. I haven’t found anything helps me. The virus invading the ears seems to be a less common occurrence. It truly affects everything. I am dizzy all the time, I feel pressure in my head and ears, noise and light sensitivity. Now my eyes seem to be involved too.
A Neurologist diagnosed me with Ocular Migraine, but migraine meds have not helped me. Wrong diagnosis.
I am currently trying Microcurrent Neurofeedback. I have had ten sessions with no change. I will continue awhile longer and report any improvement. I am waitlisted for a long Covid Clinic in my area. No idea if I’ll ever get in. Doctors who are trying to help are overwhelmed. Please let me know if you find any answers.
Thanks for your reply. These symptoms are different from most it seems.

Jump to this post

Hi dloos,

The virus affected my ears as well. For over 2 years I had ‘thundering’ sounds in my right ear and also if I even touched the right side of my face. I went to my GP, I went to an ENT, nobody knew what was going on with me and didn’t even suggest anything. It Was making me crazy. Finally one day after two years, it just went away. I guess I can say that one of my symptoms went away.

REPLY

Hi Lindy,
Thank you for the reply. I pray something like that will happen for me! It does make you feel like you’re going crazy. I’ve had various diagnosis from”I don’t know” to “Nerve deteriorations for which there is no treatment”
All very disheartening! I am happy for the support we can find from fellow sufferers.
Keep your fingers crossed for me!
Thanks.

REPLY
Please sign in or register to post a reply.