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canidmajor's avatar

Does anybody else here have Long Covid? (Please see details)

Asked by canidmajor (21397points) 1 month ago

This is a serious question, I could use some practical advice.
I’m going on ten months, and coping, but it is really frustrating. Fatigue, brain fog, various problems with various systems, all the stuff you’ve heard about.

No, it’s not Lyme or low iron or a vitamin deficiency, I’ve had the blood tests and the doctors appointments.

Anybody got any tips that have worked for you?

My poor dog is getting pretty bored.

Thanks

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21 Answers

Blackwater_Park's avatar

I’m so sorry to hear this. I know several also struggling with it. I can’t offer any advice, but can give moral support.

canidmajor's avatar

Thanks, @Blackwater_Park. I wish for your friends an alleviation of their symptoms. It’s a bear.

janbb's avatar

Here’s a paste from an article in the NY Times that I sent to my nephew who seems to have long Covid. He did try the drug mentioned and it did help but a side effect for him was that it stopped him from sleeping well. It might help you though:

Take Meighan Stone. Long Covid took her from a prominent life in advocacy — a former president of the Malala Fund who had worked on H.I.V./AIDS projects with the Clinton Foundation — to illness so severe that, for now, she cannot work.

”“My friends used to call me the Energizer bunny,” Stone told me. Now she can barely leave her house. Low-dose naltrexone has helped. She learned of the drug from other patients, but she said her first long Covid clinic refused to prescribe it because it wasn’t approved for the condition.

Later, when Stone had to go on Medicaid, she spent months searching for a neurologist who would take that insurance and who might prescribe low-dose naltrexone. When she finally found one, Medicaid wouldn’t cover the drug, again because of lack of Food and Drug Administration approval. After two visits, that neurologist stopped accepting Medicaid, so she was left without a clinician to guide her as she started taking the drug.

Encouraged by the experience of other patients she found on Facebook, she kept taking it, despite initial side effects. After two months, she was able to leave her bed and to tolerate light and sound — not a cure but a real improvement for someone very ill.”

NY Times, 2/18/24

https://www.nytimes.com/2024/02/18/opinion/long-covid-research-funding.html

canidmajor's avatar

@janbb, what a great article! Thanks. I’ll ask my Dr about it. I am fortunate to not be in nearly as bad shape as some, but I do miss a lot of my regular activity.

janbb's avatar

^^ My nephew said it definitely gave him more pep.

JLeslie's avatar

I know a couple of people who had it for several months and eventually they did get better. One of them had a lot of fatigue and lingering lung problems. I know she went to a pulmonologist, but I don’t know what he did for her, or if she attributes getting better from treatment he gave her.

My parents have a friend who has a lot of problems following covid and it drags on. It affected his heart. He was sick early in the pandemic.

More than one person has claimed they finally came out of long covid when they got vaccinated, but I think all of those claims that I’m aware of were the first round of shots. An actress said it, I read articles about it. Have you had a vaccine since you had covid?

I read this article that said one hypothesis for long covid is: Latent (or dormant) viruses inside an individual reactivate. (Every person carries multiple viruses that are dormant. Under certain circumstances, they can be reactivated.)

Here’s the article: https://www.yalemedicine.org/news/long-covid-symptoms

The article also touches on claims a covid vaccine possibly helping recover from long covid.

It also mentions a study being done with Paxlovid for long covid. Did you take Paxlovid when you were first sick? I took it for 48 hours and then had to stop because of side effects, BUT after taking three of the pills my covid symptoms were going away, it was working, and really surprising my sinuses and head was clearer than I have been in over 25 years. I didn’t even know I wasn’t that clear. It was remarkable, and so I feel it was curing something. I had to stop Paxlovid early so I went back to all the symptoms again.

This is why the idea that covid can trigger other viruses is interesting to me, because Paxlovid was helping something else in me. Possibly, you are now sick with something undiagnosed and never has been identified by medical science. Reminds me of chronic fatigue syndrome. Or, maybe it is just inflammation, which is suggested in the article. This makes wonder if tetracycline or doxycycline is being tested for long covid? These drugs, and others in that class, are thought to have anti-inflammatory and anti-viral properties, and of course we know anti-bacterial. If it was me I would want to try it as a shot in the dark, but the problem is finding a doctor to prescribe. This is totally just my own guessing at what might work. Doxy has been given for active covid.

When I had covid I was offered to be in a study treating me with Metformin, the diabetes drug. Since then I’ve read studies showing Metformin significantly reduced the chance of developing long covid. I have not seen a study using Metformin to treat long covid, but it seems like there should be one. If you don’t already, I would try eating a “diabetic diet” for a few weeks and see if it helps. Lower carb diet and plenty of vegetables basically. You might already do that. This is purely from my head putting together information, not something I read.

Sorry I rambled so long. I just thought maybe something in my scattered thoughts might help. I hope you feel better soon.

MrGrimm888's avatar

My nephew, his girlfriend, and their baby, ALL have “long Covid.” It’s really depressing watching them coughing.
I notice it a lot, because I’m not used to being around someone who coughs all the time.
They all cough, and occasionally deal with other symptoms.

It’s hard to imagine that I was in the hospital SO much, but never contracted it. I suppose the vaccines helped.

I’m definitely not happy, to hear this bad news as well @canidmor ...
You have my support, for what that’s worth.

I know that sometimes feeling sick, can keep one couped up.
I know you enjoy sailing. Any chance there’s a place around you, where you could maybe hang out/sit, and just enjoy the fresh air and UV?

I’ve been killing myself to make my mother’s garden look nice, to encourage her to maybe just sit out there for 15 minutes a day or so.
Especially now, when all the plants are blooming and the birds are chirping.
When I was dying in the hospital, I promised myself that if I pulled through, I’d enjoy nature more.
I really would have missed it.
I wish people could get out more.

It’s dangerously hot, where I am, but if you’re close to sailing, maybe you are close to a sea breeze.

Perhaps there’s an outdoor bar/grill, that has live music. Those can be places for people of all ages, and capabilities.
I used to work for large music venues. As the head of security, I made sure anyone who came could see the show.
Maybe a trip to an old friend’s place.
Attempting to socialize more, could bring new friends.

Everyone has something, that helps them recharge.
It doesn’t have to be kite-surfing.
I spend at least an hour a day playing guitar.
Maybe you could learn an instrument, or try painting.
Such things cam be very rewarding.

I feel like keeping in good spirits, is as important as almost everything else.

I wish you the very best of luck.
Keep hope alive.

Peace and love.

Kardamom's avatar

I’m sorry you are going through this. I have several friends that have long covid too, two of them contracted covid in 2021, and again in 2022 and have been having the symptoms of brain fog and fatigue especially, plus they seem to have had a lot of other illnesses both mild and serious, after the first bout of covid.

I am still following most of the covid prevention protocols due to having high risk people in my family and friends group. I read a lot of information about covid and long covid. The links below are a small sampling of some of the things you might find helpful.

Naltrexone might be something that will help long covid sufferers:
https://news.griffith.edu.au/2024/05/07/exciting-breakthrough-offers-hope-for-long-covid-patients/

Patient trials, and long covid clinics:
https://www.science.org/content/article/long-covid-trials-aim-clear-lingering-virus-help-patients-need

The People’s CDC.
“A coalition of volunteer-run cooperative teams, we work to end the COVID pandemic for everyone, to expand the social safety net, and to build the robust public health infrastructure we all deserve.”
https://peoplescdc.org/

Patient-led Research Collaborative:
https://patientresearchcovid19.com/

Covid and Long Covid info and documents/
https://docs.google.com/document/d/1wBeij66k0pPbvludxtSU36vbnRU--Xl1HdQKqmNTJ_Y/mobilebasic

Lots and lots of covid and long covid resources (just keep scrolling until you find what you need). This is a good one to save:
https://www.patreon.com/posts/huge-free-covid-86871700

chyna's avatar

I have nothing to add because I don’t know anyone with long covid, but I’m very sorry you are going through this @canidmajor.
Also, everyone had very interesting information.

canidmajor's avatar

I am beyond appreciative of the help and compassion shown in this thread, thank you all so much. Like I said above, I am fortunate to not be as seriously affected as some, I have had no pulmonary involvement (???) for which I am grateful, and I am part of the Yale health system, which I consider an advantage.

There is still so much we don’t know about Covid and the subsequent problems. Ugh.

flutherother's avatar

@canidmajor Sorry to hear what you’re going through. My daughter had long covid through much of 2022. She has made a complete recovery and she said she found this book helpful and encouraging.

canidmajor's avatar

Oh, @flutherother, that is so encouraging! I lose heart some days. Thanks for the recommendation, I’ll be getting that book!

raum's avatar

No advice or knowledge to share. Just sending hugs.

Tropical_Willie's avatar

{{{HUGS}}}

One person I know has long COVID from November 2020, his wife died in ICU, while he was also in ICU. He has memory fog (but it has improved) still but got rid of the lung function problem.

Cupcake's avatar

I’ve been sick and severely disabled with Long COVID for over 2–½ years. My cognition/memory is so poor (1st %tile) that we’re doing a dementia workup. No system in my body works appropriately. Most physicians do not know much of anything about Long COVID and most Long COVID clinics don’t do much. There are no treatments. Please read up on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Even if you don’t have it, please make sure to learn about your energy envelop and pacing. You must not overexert yourself, physically, cognitively, or emotionally. Use reminders and alarms and set systems in place to not rely on memory. Rest and sleep well. Remove as much stress from your life as you can. Avoid any infections. Optimize your nutrition and find a diet that works for you. I hope things work out for you. Not to scare you, but things can get much, much worse. Try to minimize demands to keep your baseline as high as possible.

Many people with Long COVID do have underlying reactivated infections, like Epstein Barr, HHV, Lyme disease and other tick-borne infections, etc. These are usually the only things that are “treatable”, but some can be hard to find. In addition, some people find some benefit from antivirals (such as repurposed HIV meds) or nicotine patches to try to eliminate COVID spike protein from circulation. Twitter/X is a great source of up-to-date information and community.

canidmajor's avatar

Oh, @Cupcake, I am so sorry to hear this! I am probably halfway from where you are. After 10 months, I have learned a lot about pacing myself, but I still screw up from time to time and lay myself out for days.
Thanks for the tip about studying the steps for dealing with CFS and the like. I try to do that (when I remember!)

I really hope you get better, this things is so sucky, and the frustration alone is crazy making. <3

MrGrimm888's avatar

Misery loves company.

MrGrimm888's avatar

Just commenting on the poor luck, several of us jellies are going through…

canidmajor's avatar

I have never felt that way, personally. I don’t find any joy in the suffering of others.

MrGrimm888's avatar

^That was NOT, what I meant.

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