Zootsoot
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Had extensive testing for this damn fatigue. Papers SHOW LC mitochondrial issues happen. Had to buy an OTC machine. So tired of this crap.
Mar 21, 2024 10:59 PM
Zootsoot
46739
623
34
Had extensive testing for this damn fatigue. Papers SHOW LC mitochondrial issues happen. Had to buy an OTC machine. So tired of this crap.
fedeColorTerror
I understand you. Have been blocked in bed for six months now (no COVID but similar symptoms) and I'm so tired of this shit.
Micah1966
Laughs in 45 years of misunderstood and misdiagnosed and untreated and untreatable chronic fatigue.
Sorry dude, that's the way they do with people who have things they can't explain. For some reason they keep discovering shit AND at the same time saying of certain things "that's not real", not understanding that all the things they are discovering meant that before that that thing was not real either. I am from a time when MS was not known, and where people with MS were treated the same way.
r0twhylr
I'm sorry to hear that, and good luck. With that being said: My wife and I have a hard time finding doctors to deal with everyday normal shit.
KZFDG
Had it 2.5 years, truly hellish
wasitsomethingisaid
I was surprized how much Low Dose Naltrexone helped most of my stmptoms after 4 years of LC
allyjo8888
Welcome to post-viral dysautonomia. Join r/dysautonomia, too.
Nickolbedo
My advise, having recovered from long covid. Treat the symptoms as individual issues. Changed my diet and take supplements for inflammation. Went to physical therapy for wrecking my back, turns out long covid fatigue/pain went away the same time. Covid crossed into systems of the body viruses usually don’t end up. Do everything you can to support a heathy gut as that will help inflammation, energy, recovery. NSAIDS impact your gut negatively as a caution. Supplements don’t replace a good diet.
HeroThatWasNeeded
@OP Chances are specialists in that won't be available for a while, however, there might be another avenue for your LC. https://www.nih.gov/news-events/nih-research-matters/immune-hormonal-features-long-covid Talk to your doctor about this, the RECOVER trial and look into Dr. Akiko Iwasaki.
Zootsoot
Thank you!! I will!
foxybelle
I too have long covid..for almost two years now. I'm kinda desperate at this point. I'm not half of what i used to be. But i'm better than yesterday, so i still have hope.
OliverOtter
Long covid is so new and poorly understood it will be years before "papers" translate to "standards of medical practice to treat long covid." If you want treatment, right now you're looking at "possible treatment that may or may not work, but you'll be a guinea pig to find out, and you have a 50:50 chance of just getting a placebo." https://clinicaltrials.gov/search?cond=long%20covid Though many will switch you to the active treatment as soon as they've collected 95% confidence it works.
Zootsoot
I‘ll look into it. Since I gutted it out and didn’t get a PCR at the time (it was DEEP in lockdown, and I didn’t have the energy to argue w/ my Ex- who knew he brought it home/was deep in denial to drive me to get tested. And at UCLA, they want lab proof to verify it before they‘ll allow you into the trials. It’s really discouraging.
tyrunn
I had COVID twice, first time moderately bad - now at 41 I'm hyper tensive, seemingly the type that doesn't respond to medication.
I hope you get the help you need, Long COVID is terrible
igiggledtoohard
Don't know if I have long COVID or COVID just fucked up my lungs. I haven't needed an inhaler for over 25 years. But now I need one whenever I do anything more than light cardio. I've been playing hockey 2-3 times a week for over 15 years without an issue, in some high skilled leagues too. It really sucks
Zootsoot
I hear you. I went from my asthma improving to the point that I maybe used my inhaler every other day, to needing a nebulizer daily.
Btw- albuterol is good for opening airway. But see if you can get a steroid inhaler to follow it. That helps keep down underlying inflammation and increases your endurance through all that cold air on the ice. Helps prevent chest infections too!
GeneralRath
Have some long-COVID fatigue myself. Ketamine infusions and Niacin have helped. There's no peer-reviewed data on it, though there are some theory papers that suggest it should work. There are also clinics at a few research hospitals near me at least.
Hope yah find something that helps.
SquaresUnfiltered
You can think Donald Trump for that
DJOldguy
Seems long covid has lots of unexpected side issues, but one Aussie study suggested mild exercise then build it up over months eases physical and mental issues. Dunno how this would fit here, but it's something.
QueLinda1205
@op, I have nothing to add but my sympathy. I got COVID for the first and only time on Thanksgiving 2022 and I'm still dealing with the aftereffects. My doctor referred me to a specialist in January of this year and they couldn't see me until June. So I did my own research and found a different specialist who could see me in mid-April. I hope you get some answers -- and more importantly, relief! -- soon!
Zootsoot
Hi- I’m so sorry. It’s awful, isn’t it? This is off the beaten path- but I found an acupuncturist that uses NAET, and it’s helped a lot with the inflammatory issues. I’m really glad you found someone to see you.
QueLinda1205
Thanks for the tip, friend! I will look into it near me!
beegobuzz
What state are you in? Maybe we can all help you find someone!
Zootsoot
Thanks! I’m in Los Angeles- and weirdly, I haven’t found any mitochondrial specialists here. Any and all references appreciated.
beegobuzz
https://www.umdf.org/find-a-doctor/ Also, check UCLA! They have a great genetics department!
trialrunner1520
Everyone keeps saying Covid has been around for 3 years. I’d like to remind everyone that Covid turned 4 in the US this March! 🎉😑
Brunomars1
At some point you just have to give into it and take a nap EVERYDAY.
RunawaySpoons
It's not giving in, it's accepting what your body needs and respecting that.
Zootsoot
Nap and I are close friends by now- you’re exactly right!
hajimedj
Imagine expecting to easily find a specialist in a field for a symptom that exists for barely three years
Zootsoot
I’m a Public Health scientist. Got Covid while working as a Covid Tracer & done medical research. There are already mitochondria specialists & research on Long Covid mitochondrial damage. There are even MD’s who worked the Covid ICU who are struggling to get decent care now- I’ve actually gotten as far as I have due to sharing notes w/ other scientists w/ Long Covid.
PirateRubberDuck
Imagine being chronically ill to the point you can't work for 3 years and being told repeatedly by doctors that they don't understand your condition and are treating you mostly through guesswork. Then Imagine that you know other people who are suffering the same and realise there are millions of people in the same boat, but still no specialists. You feel very let down.
Zootsoot
Exactly. Thank you! :-)
EternallyIgnorant
They never said they expected to find one, let alone easily, and while its trues its only been three years, it was also a world wide pandemic effecting every person on the planet. its not like some niche disease no one has heard of.
cousteau
Not long covid though; that only affected a small fraction of the infected.
MadamPuddifoot
I know a lady on Twitter who has long covid, she's an insufferable BITCH. she thought, at the START of covid, that I called covid fake (I NEVER did), and STILL HAS NOT APOLOGIZED to me even though I showed photo evidence that what she thought happened did not. Her name is Daria and if she's on here: nobody hates you coz you have long covid, we hate you cuz you're a fucking ASSHOLE!
MadamPuddifoot
She is also the discouraging kind of stupid who bashes certain people/events for being "super spreader events" while attending other events with the same protocols. She's deeply mentally unwell but refuses to do anything except dog her heels in. Almost everyone in our profession (on Twitter, how we connect) hates her, most kissy from song how she treats others.
kgirl924
Sounds like you need to push this woman out of your life and not deal with her anymore. You don't need to get this angry at someone on the internet, it isn't worth your time or energy.
MadamPuddifoot
I don't interact with her at all anymore, but she constantly pushes her way into our discussions, unfortunately. If I ever aww her at a conference I will literally leave.
michaelfire
I've been to 4 docs- none have a clue. But I do know Trump weaponized Covid, like Reagan/Bush weaponized HIV-AIDS. https://www.businessinsider.com/kushner-covid-19-plan-maybe-axed-for-political-reasons-report-2020-7
loading=">report-2020-7 
s="comment__media" loading="lazy"/> Up to 20m in US with long Covid. https://abcnews.go.com/Health/understanding-long-covid/story?id=108040827 https://www.history.com/news/aids-epidemic-ronald-reagan
cousteau
I wonder how this plot has changed in the last 10 years. For instance, I read somewhere that Ireland currently has the highest or one of the highest life expectancies in the EU.
michaelfire
https://www.cnn.com/2023/01/31/health/us-health-care-spending-global-perspective/index.html
IMPICKLERICK
The mitochondria is the power house of the cell. I hope this helps @op!
timtams
literally came here to post this, word for word
aardvarckj
You're a lifesaver.
gtollie
Would be even funnier is @IMPICKLERICK was actually a doctor ! Thanks Doc!
IMPICKLERICK
But I am a doctor! Look at my qualifications!
Zootsoot
Lol! Thank you! I’ve started the Wahls Protocol diet that’s specifically for building up your mitochondria. It’s helping a lot. But I need the O2 to be able to do much of anything.
DancingSwine
You run around with your mouth open filtering plancton ?
pkspidermonkey
@op Ive been using an NAD+ precursor called tru niagen, it's helped immensely with energy and it apparently helps boost mitochondrial production. I just wish I had this after swine flu in '09, that was just like longcovid. Good luck with everything 🙏
Zootsoot
I just started that!! It’s really good to hear it’s helping you! Thank you for sharing that!
Hyzenthlay021
Just a suggestion; I suffer from the same condition. I've found that an occasional iron pill helps enormously. I was turned away from giving blood a few months back because of low blood iron, and they gave me a bottle. Not a 100% solution, but it did make a big difference. They're cheap, and can't hurt if you don't overuse. I'd give them a try.
Zootsoot
Thanks! I actually have those tested- constantly. And since the Wahls diet has me constantly eating high iron foods, it’s not anemia. :-)
hwatL4bloopy
Dr tek in Pasadena
Zootsoot
Thanks!! I’ll give his office a call!!
hwatL4bloopy
Oh he specializes in anti-aging approaches. I can see it potentially helping you
Zootsoot
I saw- and since mitochondrial loss is often part of aging- he might be able to help!
hwatL4bloopy
There are other anti-aging doctors out there with similar approaches. I did a sermorelin cycle else where and it really helped with my fatigue. My aunt told me about him and from there I looked into other options
Zootsoot
Great! Thank you. I used to see Dr. Gruenn here on the West Side- but he moved up to Ohai.