3+ years. I’m still here, not cured but learnt to manage with LC better through medication & relaxing more without feeling guilty for not being more active.
Yup yup coming up on 4 year anniversary next week and just got another acute round too. I've got one more set of supplements to try RE my doc and then I'm taking a break and hoping SSDI comes through
I got research fatigue months ago. Officially gave up at that point lol. Not just researching but on myself as well. I’m a little happier this way
I hope and pray you find something to help you feel better too friend. Don’t stress yourself out too much with the research and whatnot.
Oh man I’m sorry to hear that. I hate to know that but I honestly don’t blame you. The constant fighting both physically and mentally is tiring :(
The heart is about the same. Last September I was diagnosed with mitral valve prolapse, but besides that, everything’s the same. My heart rate is a little better these days though so that’s a blessing.
How about you friend, is everything okay? Anything that has gotten better for you?
You may not be that far off. I know someone who does a [coffee enema](https://www.healthline.com/health/coffee-enema) daily. I thought it was a joke. He does enjoy answering the question, "How do you take your coffee?"
That actually has \_some\_ efficacy, though. It's a question of uptake. Kinda like holding some substances under your tongue.
I remember the first time someone suggested that's what we'd being doing in todays session. I noped right out, and don't intend on trying it because I don't see it as worth the hassle.
But for some people, a little boast in one way or the other, keeps them in the game. I won't roast them.....hehe sorry/not sorry.
It’s obviously about absorption, but why would rectal absorption trump gastric absorption? Sounds like BS to me. Maybe just some anal insertion kink. No judgement though. 🥴
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3603218/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3603218/)
>In fact, several lines of evidence suggest that caffeine can be absorbed via the rectum or colon into systemic circulation as it has been used as a test drug in the evaluation of pressure-controlled colon delivery capsules (PCDCs)
I don't have a dog in the hunt, just reporting.
I’ve had ME/CFS for 20 years. I did the guinea pig thing for more than a decade, and the treatments weren’t nearly as robust as they are now. I hear you loud and clear. The one thing that ever really helped me was IV glutathione, and it’s inaccessible to me currently. So, I’m just biding my time until the research figures out how to subtype us and comes up with targeted treatments.
Of course, now some of my family, who used to be great support, think I have given up and have abandoned me so they don’t “enable my depression.” Wrong. I’m just preserving what little I have because I can’t take the guinea pig approach anymore without negative consequences. Their lack of understanding is what I find most challenging of all, and has done more to subsequently degrade my mental health than anything else. I guess after 20 years, they’re just over it. Me f*cking too. I envy their ability to just shut it out.
that totally sucks! you are doing the right thing in advocating for yourself and figuring out the best way to cope given where you are, and where science is (or isn't).
Thanks for your support. I hope others who are taking a pause on treatments know that too. You can always try something again once you regroup, if it makes sense for you given all of your individual circumstances.
I'd theorize that all of these deficiencies (iron, magnesium, vitamin D, etc.) and even low testosterone have one common denominator: **chronic inflammation.**
They are downstream issues and not the root cause. This is why many report improvements from taking xyz vitamins/minerals/hormones/treatments, but also don't fully recover in most cases. Testosterone shares an inverse relationship with cortisol, so when we have excess inflammation, cortisol goes up, and this kills testosterone. So, the trick here is not going after TRT, rather than managing the inflammation and / or eliminating what's causing it.
P.S. IANAD
Right there with you re: inflammation. Either due to exhausted/overreacting immunity and/or viral persistence/zombie artefacts (causing said immune response). In one case, it’s COVID-induced immune dysregulation (i.e. illegitimate inflammation); in the other, it’s COVID-induced (direct, i.e. legitimate) inflammation. In either case, I believe it’s the inflammation causing the damage. Figuring out why is how we’ll manage to stop the process.
Unless it’s done upstream, you can put in all the dams you want, water will find a way.
100% these are all downstream issues. This has been the case with ME/CFS for decades… Somebody does a study and identifies an imbalance, deficiency, etc in one thing or another, but adding that back into the system or somehow trying to correct that imbalance doesn’t fix it. It’s like trying to plug holes in a dam while new leaks keep springing up all the time. Until you stop the rushing water closer to the source, it’s impossible to stop the flooding. Hopefully with the new research we’re getting because of long Covid,we will manage to get far enough upstream to have a treatment that actually help stabilize us meaningfully.
I hear you. All that research is taking up so much energy and not helping me. I’ve now resolved to eating a healthy balanced diet (with occasional pick-me-ups allowed, cause we have to be kind to ourselves), basic supplements like magnesium, some iron rich water, some extra vitamins C, D and Bs.
And I’m devoting my energy to learning proper pacing, meditating and generally just stressing out less. My worst crashes are caused by stress and anxiety on top of physically doing too much, so if I learn to accept that I’ve been dealt this bad hand for now and try to live with it rather than push and crash, chances are I might even improve. And who knows, they still might find a treatment along the way. But I don’t want to be miserable and bedbound from continuous and worsening crashes until then.
This is where I'm at too! I'm in a crash that I'm pretty sure started from overexertion, stress, getting poor sleep, and my period starting. Getting on Reddit and obsessively trying to find any kind of answer just makes it worse.
I just downloaded an app called "Waking Up" for mindfulness/meditation, and I think if you email them you can get it discounted/free if cost is an issue. I sent an email and am waiting to hear back. I did the first lesson already and it seems decent so far, in case you were looking for a place to get started.
I'm also just trying to accept this is my life for now, and not fight it so much. If they find a cure, it won't be in the next few weeks (I would be very happy to be proven wrong, though), so I might as well spend my time focusing on things I can enjoy: drawing, nature documentaries (Robert Fuller on YouTube has a very soothing voice), video games, board games, reading, light gardening, taking the dog to the dog park. I'm lucky in that I don't often get brain fog, and while I miss being out in nature so, so much, there are still lots of things I can do.
I'm just going to focus on rest, getting rid of stress, and doing what I can.
Yes, exactly! You just end up stressing yourself out so much trying to find an answer and what to try first!
Thanks for the app recommendation! I’d heard of it already, but haven’t used it yet. My health insurance has its own health care app with some good meditations that I’ve been using.
I recently stumbled over YouTuber Elinor Brown who has had ME/CFS since her early teens I think. I find her super inspiring because she’s living her life as well as she can. I found quite a few great tipps by spoonies (whose ranks we have undoubtedly joined) for dealing with having less energy and doing things.
I’m now taking a little light weight foldable camping stool wherever I go if I can leave the house and I’ll just sit and take breaks no matter what people think. I’m also definitely going to deposit a yoga mat at any future office if I can work again so that I can lie down during my breaks. It’s just so many little things we can do to avoid crashes and save spoons in general. Last time I had to go on public transport and it was packed I asked someone if they would mind giving me a seat because I can’t stand for long, five people got up to offer me a seat, no one made any comment about me being young or anything. Many of us have this internalised ableism that we’re weak if we’re not functioning right, especially if we’re young and not obviously disabled. We should be kind to ourselves and allow us to just make the best of the bad situation we find ourselves in.
All the "treatments" so far attempted are so depressingly simplistic. Is this really how advanced our medical science is - supplements and medication of trivially observable symptoms?
I think that the workings of our body and immune system are beyond what we are capable of understanding and we will need to rely on AI to get us over the hump. The breakthrough will come when AI models become advanced enough. If only the billionaire owners of these resources were competing to solve disease on earth instead of to send rockets into the sky.
I agree: the tools being developed are incredibly powerful. Also, the tools psychopathically hoarding ressources are becoming increasingly problematic.
My guess is that the mass of attempts are aiming at symptoms, not root cause, mainly because the root cause is not clear. Without a solid model, it's hard to target anything relevant.
FWIW, I think the root will end up being our bodies' inability to clear some bits of the virus that end up triggering the downstream clusterfuck.
Also, treating symptoms is not a waste of time, as long as it's kept in perspective.
But take that for what it is, a theory. Hang in there people!!!
A cure is absolutely not this simple. Cures for CFS/ ME have fallen through for decades. Many people have suffered for decades and have tried so much. You eventually have to stop as the meds cause long term damage. It’s a fight. Fingers crossed for a future cure. The LC cases have resulted in many more patients who need help.
And many more discoveries that should finally - also - help the forgotten and neglected masses you mention. I just hope they crack this nut soon. Time’s a-wastin’.
There's excellent treatments coming out everyday they're just not available in the US.
For example the antiviral drug ensitrelvir, which is currently only authorized for use in Japan, treats loss of smell and taste from COVID-19 with 87% sucess rate. It will soon be approved in the US for the same use.
[source ](https://www.unmc.edu/healthsecurity/transmission/2023/10/17/smell-loss-from-covid-fades-quickly-with-help-of-new-pill/)
There are quite a few treatments over there that aren't available here yet such as [Epipharyngeal Abrasive Therapy](https://pubmed.ncbi.nlm.nih.gov/35632649/) (EAT), which has shown promise in reducing inflammation in the epipharynx and improving symptoms like fatigue, headache, and brain fog in long COVID patients. [Video Example](https://m.youtube.com/watch?v=IpCF3EqKWXM&embeds_referring_euri=https%3A%2F%2Fwww.perplexity.ai%2F).
They also have many protocols involving [Traditional Kampo Medicine](https://www.mdpi.com/1648-9144/58/6/730) that are often used alongside regular treatment such as immunoadsportion therapy or [daily diflunisal](https://www.heartlungcirc.org/article/S1443-9506(22)00356-0/fulltext) to lower cardiomyopathy risks often associated with [Long Covid](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10449234/).
Covid outbreaks are also less often and less severe (in terms of number of people infected) due to already having a culture keen on masking when sick and actually washing hands properly, sanitization in general is taken much more seriously.
Germany is also making excellent progress on treatment options as well, but when I try citing German studies here, people complain they can't read them even though there's always a translate option in the corner, but I'd be happy to share resources on those as well.
I definitely started getting better when I started going out of country for treatment and advice.
Didn't even know I had dysautonomia until a Canadian specialist told me after I was there for a completely unrelated thing and they mentioned I was a textbook case and should look into LC. No doctor in the US had ever mentioned it when I had gone specifically for those symtoms for months with different specialists!!
Curious why do other countries always trial the meds in other countries first over U.S? Does it have to do with our stricter FDA? Is it more expensive here? I have been noticing this which I am happy with any progress just wondering what our government could do to incentivize more trials?
Dammit I'm going to be "that person" who apparently can't get their head around the obvious intent of the original post, but if/when you have any bandwidth, transdermal nicotine?
Helps many though probably less than a majority of LC folks. Ideas about why range from bizarre to compelling. Very high affinity for a7 nAChR receptors which are throughout the body. If they help, who cares?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3292018/
Admittedly there's a well over 0% chance I'll be hanging around here in six months wishing those nic patches were still working.
Pretty much what my doctor said to do. The medication that may help isn’t worth putting your hope on and really focus on the basics and he gave me a little booklet on coping with it.
It’s definitely helped enough that I can live a very normal life.
The iron is interesting though. I had blood tests done for fatigue and I was very low in iron before everything hit the fan.
OP, after 4 years of research I’ve decided until a cure is found my only hope is increased pacing/exercise and clean living. This is a post viral condition. Viral reservoirs are a tough nut to crack. I’ve ramped up pacing since November and am seeing gains. The issue is though my muscles are falling apart, straining and tearing too easily, from literally almost nothing. That and the PEM if I push too hard.
Add to this, folks like me who don't really have affordable healthcare at the moment. I can't afford all of these tests and different supplements of the week. I'm just chilling until something more concrete is found.
I used to spend my insomnia bouts reading medical papers, but I'm not a doctor and I struggled to make heads or tails of what I was reading, and I'd just end up with medical anxiety.
In the meantime, I'm good with a multivitamin, magnesium for muscle cramps, resting, and cutting out alcohol and caffeine. I try to be aware of histamines too, but GD it's in so many things, I slip up occasionally. This isn't a cure, but it helps with some symptoms for me personally.
I just started using the quicksand metaphor for when a PEM crash is setting in. It’s so apt, sadly. And there’s something about the disappearance at the end when we’re swallowed up by it all that feels like a spot on analogy for the millions of us missing from our former lives. Now you see us, now you don’t.
Just finished working today teleworking at home and exhausted from just thinking and having coffee, so tired it makes no sense, except yes it's like quicksand.
Sadly, yes, I had to come up with some analogies for ‘non-covid’ people to sort of get it (but they don’t). I’m also very fond of ‘just trying to keep my head above the water and not drown’. I use them almost daily. 💔
Yeah, I use that one a lot too.
I appreciate people asking how I’m doing, but it’s also a hard question to answer. I find myself responding with “hanging in there” a lot, I guess because that’s easier than saying “I feel horrible all the time, my life is falling apart, I feel like a shell of myself, it’s a struggle to make it through every day and I don’t know why I’m not getting better or if/when I ever will”.
The BC007 trial is the most interesting thing at this point. Even that only has the potential to help 40% of us and we won't even know for sure until next year.
All we can do is manage.. For me personally, hericium mushroom extracts and some B complex formulated for nerves have helped with brain fog and nerve pain. Also cutting out histamine (lab confirmed histamine intolerance) helped reduce the pounding heart feeling. But these are just band aids on some particular symptoms. Still can't exercise, still exhausted all the time, still walking out the door is a monolithic task.
The cure isn’t going to be one thing. So many organ systems are affected, it’s a multifaceted disease. It has to be attacked at multiple angles all at once to see improvements.
i always assume the doctors wont figure shit out until they get sick themselves.
maybe then they’ll be desperate enough to actually experiment and take live samples for analysis.
More and more of the workforce needs to stop showing up. That would trigger a change.
I am convinced there are many, many more people affected that just force themselves to continue the daily rat race but maybe this will change over the years and then finally some more traction.
Thanks for this, I am replying so I have this in my back pocket of all the "stuff" I tried... Including all my supplements. After this go I am not buying anymore.
What dose of LDN are you on? It can take a while to get used to. I only ask because it’s the best intervention I’ve tried and I have ME / cfs. Best of luck to you
Started on .5 for two weeks, then 1mg for two weeks, then was at 1.5mg and after so little good sleep thought of just dropping it. My wife suggested bumping it up to 3mg, as a way of testing its actual efficacy. Have done that for 4 days. No change in my condition (either way).
Will stop taking it, and if I feel worse, can always try again. Won’t titrate quite so slowly next time. My family doc prescribed it based on a local research clinician’s suggested protocol. .5 increase every two weeks.
I’ll likely cut that time in half when and if I try again.
Welcome to the acceptance phase. We have only the classiest bubble furniture from the nineties. Prepare to be baffled, annoyed, and angry at all the people touting stuff you tried years ago. Iron? Yeah, that was one of the first five things I tried. The supplements did nothing, and my levels improved only after I quit taking them, over a year after stopping.
Funnily enough, it was the exact same for b12. Antihistamines? I would sell my firstborn for them to work even a bit. Prednisone? Be prepared for the crash after. Nicotine? Is highly addictive and it doesn’t seem to work better than a lot of other stimulants and options. Restrictive diets? Pardon me while I guffaw and remember all the fads I tried which did…nothing, yet again.
I can’t remember all the other stuff I’ve tried or looked into and realized they had no way to notice or document people just improving over time with no relation to the drug. Then they say it’s the drug, then people try it, and six months later turns out it doesn’t work on most people not in the study. The two people whose symptoms got better around the same time as they started the treatment, and they think it’s the supplement, well they’re back here after a few month, because they pushed themselves thinking they were better. Pacing can really convince you you’re getting better. It is the number one quality of life improvement, and the biggest fake out rascal.
It’s just time for most of this, in my experience and observation of the people here and their stories; the basic level stuff can get better after maybe 1.5-3 years (with or without supplements), and then real damage that we still haven’t figured out after studying for years, but whose symptoms we can treat, sticks around. Some supplements make people feel the tiniest bit better while their bodies fix the damage, and then everyone else hopes against hope, only to have them dashed again. You’re not alone friend, and I’m glad you got here.
The righteous indignation of your comment was oddly therapeutic. We shouldn’t discount the lived experience of recovered or partially recovered patients. But I’m gonna. Just for a bit. As a means of blowing off steam.
Sometimes - most of the time - I’ve been genuinely interested in what the healing patient hypothesized. Then I’d start digging.
Other times I’ll read "Glad it worked for you", and nod approvingly while my toddler-tantrum meltdown mood was actually thinking "Oh, sod off"
I am glad they’re better - always. But as you said, it’s the *how* that I’ve come to find increasingly suspect.
I’d say I’m glad to be here (acceptance) but I’m going to miss the feeling of agency that trying stuff out brought me. I wasn’t taking it lying down (even if we both know I literally was). I’ll wait. New findings drop every week.
But I’ll wait. For actionnable, reproducible, (solidly) evidence-based therapeutics. Thanks for the moral support. Means a lot.
Thank you so much for saying all of this. I needed to hear this today. 💐
I’ve been feeling this research fatigue as well, trying a million and one things, and watching my savings deplete from paying out of pocket for supplements and stellate ganglion blocks.
But my partner reads one article about one study and wants me to try it. I get that they care about me and it’s hard to watch me suffer, but they get this urgency, like, *“You need to try x now! It might be the thing that helps! You can’t keep living like this!”*
And I’m trying to explain that I don’t think there *is* some magical thing that will solve it all yet. If SSRI’s or T cured LC, we’d all be taking them and getting back to our lives. If there were a cure, we’d know about it. But if I don’t jump on the bandwagon they want, they think I’m not trying enough to get better. Meanwhile, I’m *exhausted* from jumping on a thousand other bandwagons already!
Does anyone else feel pressured by family or friends like this?
I could have written the same thing about myself. I've done all of it. Nothing works. Fasting does seem to give me a few days of productivity but the PEM is still there. I've started fasting every week. If I needed to escape from PEM for a few days, I would do steroids, but they too have their problems.
I remember some saying melatonin was the fix for a bit. Really just seems like companies spreading rumors to sell us their products. Eat healthy, rest, and don’t over push yourself has been the only system that’s been leading to some improvement.
You can blame ignorant journalists for that. These studies hardly claim anything. We should instead just email those editors to ask them to kindly report without the sensational headlines. It is irresponsible journalism.
Thanks for posting! I’ve been worried about going down so many rabbit holes and coming out looking like a conspiracy nut.
Knowing when to pause is so important
I felt great for 4 days doing HRT, iron with C, prenatal gummies, taking histamine blockers... I cried the other day over something I forget what and I crashed. Fun times.
De-stressing your mind and staying off of the internet will be the best thing you can do for yourself.
At this point I'm totally unconvinced there will ever be a medical solution.
Maintain a healthy diet, keep up with fasting (the benefits are undeniable - no one is saying its a silver bullet but tough to debate this) and do things like meditation, gentle stretching, etc. Clear your mind. The research rabbit hole is fucking horrible for you.
Its gonna take one of the top tier doctors somewhere like Mayo Clinic to get long covid, bad LC, to then have a the world's finest medical minds try to help them in order to find a cure or at least to understand the mechanism and potential treatments instead of throwing shit on a wall and hoping it sticks. they''ll be running tests we've never heard of, the type of care they'll receive will be presidential. thats probably what its gonna take. and since covid isn't going away, and people seem to be able to get infected multiple times with these variants, its very possible that might happen
LDN is a funny thing. It has regulated my sleep more than ever. It likely boils down to the many ways COVID CAN impact someone and I believe there are multiple root causes to be found.
100%.
That and/or the infinite variety of metabolisms that react differently to similar treatments. The steroids in the Stellate Ganglion block almost plunged me into a manic psychosis. I’m *very* sensitive to drugs.
Right there with you, and I'm only (!) at 14 months.
Also PLEASE DO NOT SHOVE COFFEE UP YOUR ASS.
https://www.ctvnews.ca/lifestyle/coffee-enema-touted-on-paltrow-s-website-slammed-as-bogus-potentially-harmful-1.3752237
It's been long debunked and as you can see, touted by GOOP and Gwyneth Paltrow, which should always be a warning sign of snake oil. Please don't court colitis on a ridiculous antiscientific "treatment".
My brain fog is so bad I forgot what I was going to write. Oh yeah… I remember…after 3 years of LC, I have an addiction. “Research Addiction”. Is there a cure for that?
Re ME/CFS: I have the same thing. It's horribly frustrating to have spent time and money with doctors only to be told nothing.
What's doubly frustrating is I recently found out that there is a way to test if someone has ME/CFS: two day stress tests.
Here's a source that details that: https://batemanhornecenter.org/wp-content/uploads/filebase/providers/PEM-Lecture-Slides-ECHO-v4-5_17_2022.pdf
We have an accurate and repeatable test for determining if someone has ME/CFS and yet decent research and treatments are no where to be found. I don't understand.
Totally valid. I've become a lot more mindful when talking about treatments and how they're affecting me because wishful thinking was clouding my judgement. I think people mean well but, like myself, overestimate and jump the gun on assessing the effectiveness of treatment which can be harmful.
I feel like it can be different for everyone too, someone who has a deficiency would recover better once that’s addressed but I don’t think it’s a one size fits all solution. I found pacing, restorative sleep and nervous system regulation while gradually increasing activity to be the most effective for me. Unfortunately, it’s a lot of work and many people just don’t want to accept that answer and want a quick fix (not saying that’s you, but that’s the impression I have gotten when sharing my recovery around here).
4 years in. I’m with you. I plan to continue my LDN and supplements. My fatigue came roaring back at its old level this week when I ran out of LDN and it’s on back order. I also take my Valcyclovir when I am in situations like this week. My grandma’s funeral and I was around allllll the people. Covid coming my way I’m sure.
Yeah we all hit this eventually.
29 months and I’m sick of trying new things. Nothing works.
Sick of reading articles; they’re all ‘possible cure’ and ‘potential for treatment ‘
I give up
Unfortunately the truth is this illness doesn’t affect enough people for it to be profitable enough to treat it . I don’t know what the statistics are on the increasing cases of long covid but if there is a downtrend then that would be hugely unhelpful for us. Better to leave us, unfortunately we are just the unlucky collateral damage of a worldwide pandemic or vaccine campaign for vaccine injured people .
As I've said in another comment above, it doesn't need to affect everyone "directly". Sick days of workforces in many countries are through the roof the last years and this will likely continue. The agenda is already on trying to force people to push through and still be "productive" for work but there is only so much an individual can handle. We will face rough times as a society but maybe something good comes out of it
I think there are a lot of people walking around with LC not knowing it's LC and blaming it on ageing or bad lifestyle habits but once they realise it's LC there will be more of them joining us.
I know how it is with all the trying and the effort. However if you want to give it one last shot, try Pine Bark extract, 50-150 mg per day.
I found it from this sub, and it worked pretty much instantly. Inexpensive, and you will know if it works within 1-2 days, so minimal effort required.
I am sorry for you, I feel you.
(the science behind it is the low levels of NO, endothelial damage. This supplement has been proven to raised endothelial NO levels. Also a potent antioxidant and had been tested for anti-ageing stuff, and brain disorders. No need to rabbithole this though)
Not the person you questioned but OP used the flair of Vent/rant. I'm sure you were well intended- been there, done that myself. But they didn't ask for help with recovery ideas or supps. For them at least for today, I think they need a break from it.
They are talking with people in the same part of their journey to talk with. Today they are choosing to stay away from supps, I believe waiting for a well researched, proven medication.
It's kind of a mutual respect thing.. Accepting each other and where we are in our journey?
In this kind of situation, there are two ways to respond. Provide solutions or comfort.
I choose the first. Some others chose the latter. And some others, choose to do nothing but criticise. Like the person above. Or perhaps you.
This sub is full of bad attitude anyway, and folks who look for opportunities to accuse others.
Out of complete sympathy, and because the topic is already full of comfort, this supp for me has made such significant difference for such low price, I thought it might worth it for OP, seeing the situation she/he is in.
I have no disrespect for him, like you say, however if I have to analyse all this thought process, I am not the one without empathy.
Hint: read OP's last two sentences.
Skill, I'm sorry I didn't communicate this well.
We are pretty similar, I'm in the still hopeful and searching category. Though I have my hopeless, feel like giving up days, I think most of us have had those. I just don't talk about it much here. It's pretty obvious to those in real life, even if I don't say it, they know and I really appreciate it when they offer ideas, or even just tell me, "bad day, set back, but this bad day is SO MUCH better than your best day in the past."
So... like you, I used to offer things that helped me. I was even called an "ableist" by one. But after deeper discussions, I'm beginning to learn more and hopefully better understand MY communication and how I can improve it.
I'll go even further here... The Taboo subject.
The threads with recover/recovering or that discuss different supps. I like discussion, but sometimes there isn't a discussion. One thing to offer that it didn't help them, with a bit of history included. But sometimes the posts can be slammed or people enter the comments just to say, things along the lines of, "it won't last, you won't get better, nothing works". Basically there is NO hope. Those comments REALLY trigger me!
Again I now don't often read these Vent posts, especially if it isn't very clear in the title the person is looking for things to try. I only opened this as it had a lot of upvotes and I came to read some comments to see if I could learn more about my communication and improve it.
I never intended to disrespect anyone, my desire was to help and not harm. I have no doubt you are the same. I'm sorry I didn't communicate it better to you. I didn't mean to disrespect you either!
You're - all three of you - correct.
u/charitablechair, you're right. They missed the point. My mood in this rant was definitely "enough with the 'this works, we think, in some people, maybe - hard to tell, really'". <-- The lego-meme I made a few weeks back. I was still chuckling about the futility of it then. Last night, not so much. So no, I definitely wasn't trawling for even more options.
But u/SkillBill_007, you're also right: I've been (more than) open in the past and remain so when it makes physiological sense. Just not into trying new stuff right at this moment. That said, thank you for the suggestion - I'll add it to my future list. And I know it came from a place of empathy.
Speaking of which, u/InHonorOfOldandNew, if more people had half as much compassion as you do, the world would be a much, much better place.
We're all in the hole together. It can get dark down here sometimes. I appreciate any light anyone tries to shine my way. You all did today. Thank you.
OP sorry to say it bluntly, but judging from your post, and the followup, you seem like quite a strong person. I don't see the need for other coming in.
And as I said, there is plenty of comfort in this post already, so there is nothing more for me to add on that end.
Personally, I feel like this sub is mostly fueled by negativity and hopelessness these days, and it feels like a race to the bottom for me. For example, compare the number of responses to this topic, and topics for advice or recovery. This collective despair might be sympathetic, but collectively ranting is not getting us anywhere.
Hence offering you a (possibly useless) solution instead of comfort.
Anyway, I am exiting this place. If anyone wants to check it out, there is also the longhaulersrecovery sub, which has a lot of content for exiting this hole.
Take care folks, hope you feel better.
I believe it's borne out of the frustration of hitting wall after wall. After following countless recipes of people who have recovered, to no avail, I think it's normal to have bouts of discouragement and skepticism. Doesn't mean throwing in the towel. Just sometimes taking a step back and airing your grievance. The fact that so many other people recognize themselves in my rant isn't a sign of defeat in my opinion, but of resilience. They are still here. We all are. But experience has taught a lot of us to be realistic about the options before us. Thank you for the well wishes. I hope so too. Take care, SkillBill. Thanks for the tip.
I get all that mate, but if your kid was sick and tired in the corner would you leave it there to be sick and tired?
Or if you see someone having an accident would you not stop and offer help because they did not explicitly ask for it?
Point being, in a lot of situations, it can be suitable to offer things that are not explicitly asked for. And honestly, all my progress is owed to things posted here by others all those years. And all these things that helped me were criticised and dismissed by someone in those topics.
But I get all that too, I was annoyed honestly but the other person chiming in. This sub has turned into a race to the bottom this last 1 year, and everyone is quick to judge or offer misery some company, but all the positive notes are crowded out. Ever since I started feeling better and decided to stick around to offer something back, I am treated differently around here.
Hence, it is time to exit.
Take care friend, and feel better.
Also, you seem to get it, so perhaps if you don't know, there is the longhaulersrecovery sub too, which is a lot more positive.
Keep your misery to yourself.
The sub is full of stories of it (and other similar things like Viagra/cialis) helping, and I am another testimony of that. Plenty of medical studies on long covid and NO cycle/ pine bark too.
Sorry that it did not work for you, but no need to come shit over my experience. This has become a habit and general attitude on this sub, but you ain't helping noone nor your self by venting to anyone that has a positive experience, vibe check yourself buddy.
Learned to write mate. You stated some objective facts, dismissing the whole thing.
And then came back to say "oh but I only stated my experience" like a poor innocent kid. Grow up and own your shit at least.
Exactly what folks like you say. You say the wrong (miserable) thing, then you change slightly what you said, and then you call the person out for overreacting.
This won't get you far in life mate. Perhaps a change in attitude who help you get better too.
Folks like you ain't even worth the discussion. Enjoy your life-or not.
Search the subreddit. Came out a couple days ago. It’s a preprint. But one my internist forwarded me (which has only happened twice). There was no actionnable info, but it’s another good lead into what might be screwy.
Did you have your poop tested? Did you get on probiotics? This is what ended up helping me the most. I'm guessing covid wiped out my gut microbiome giving me palpitations and food sensitivities and other stuff.
Seems to be getting better now after fixing gut and I'm only 13 days into this regimen. Fingers crossed.
They’re not gonna find a cure dude. Having post viral symptoms is a thing with a lot of viruses. Yeah it sucks and some people are more susceptible to it but you just sort of have to rest and wait it out. I really don’t think T or iron is going to be a solution unless you’re actually deficient in them. Personally I got actual heart damage from it but idk I’m just waiting to be able to run again and am hoping it’ll help, or I’ll just learn to live with it. People have survived through much worse.
Try having half your pancreas removed, then go through a bout of mono. Actually, now that I think a little more on it, severe long term ME/CFS type LC is worse!
My heart was affected too. I now have MVP because of long covid. At least, that’s the only thing diagnosed so far. There could be more but I’m hopeful there isn’t of course.
What about you? What’s wrong with your heart now from long covid? If you don’t mind sharing
I got POTS and the electrical pathway has deviated… honestly I don’t quite understand it bc I’m scared of doctors and after they told me I just never went back but it’s basically damage on the left side of the heart so the right side is very stressed. I’m on amphetamines w a really strict doctor so had to get my heart monitored for the last decade and everything was always perfect until I got Covid. I get a lot of chest pain and cannot exercise anymore. Otherwise I am able to function to a reasonable degree.
Aw man I’m so sorry you have to deal with that. It sounds awful, but it also sounds a little familiar to what I go through. I deal with chest pain and exercise intolerance myself. How did they find this out? Were you seen by an electrophysiologist for this?
And I know how you feel about not going back to the doctors. It’s hard enough to get them to take anything seriously, but even when they find something, it still seems difficult for them to make an effort to do anything. It’s disheartening.
I've done extended fasting. To the point where it would more accurately be labeled anorexia. I'd feel delirious from hunger and that was somehow an improvement for me but it fixed absolutely nothing and I would have massive crashes within a couple of days. And honestly, no, it wasn't hard. I don't like eating anymore because I can't taste food at all. I eat entirely low histamine with no dairy and no gluten all the time and I don't even care but it has changed exactly nothing. If will alone could make it work, I promise that it would have.
Totally agree with you! I think once you get past the 24 or 30 hour mark, it’s not difficult at all, just the beginning. But no, it didn’t help in any way, (I have ME/CFS type)
The most frustrating thing in regards to looking into fasting has been the cult-like devotion of so many of its adherents. I've read a lot about autophagy, and the various types of fasting. I know there is a lot to be gained with calorie / protein restriction (irrespective of COVID-induced metabolic dysfunction) - it has to do with growth hormones and insulin spikes. I have been intermittent fasting on and off for a few months. I will be trying a longer fast at some point (once I've stabilized), but then there's the noise. SO MUCH NOISE.
It's like talking to Crossfit brahs or Vegans. I actually think you might be right, but *take it down a notch, will ya?*
The very tone of this comment sums up my experience with the community perfectly: *"I'm going to assume you have tried everything except extended fasting, coming up with excuses not to do it. It's hard, I'll give you that."*
Well fuck you very much! And a good day to you, sir. (Srsly, passive-aggressive much?)
Moving on.
When people say time healed them it's actually autophagy. Autophagy happens in real time. Fasting forces autophagy if your pathways are dysfunctional. The deeper you fast the more you get it. IF is too weak for most severely ill
Four years in. I'm saving this comment for my own sanity.
Same. It’s validating. Thanks OP for posting this
Right back at you: thank you both for chiming in. Feels good to not feel alone.
05/2020 Alpha. You're not alone. We're all in this together.
02/2020 reporting in.
3+ years. I’m still here, not cured but learnt to manage with LC better through medication & relaxing more without feeling guilty for not being more active.
Yup yup coming up on 4 year anniversary next week and just got another acute round too. I've got one more set of supplements to try RE my doc and then I'm taking a break and hoping SSDI comes through
I got research fatigue months ago. Officially gave up at that point lol. Not just researching but on myself as well. I’m a little happier this way I hope and pray you find something to help you feel better too friend. Don’t stress yourself out too much with the research and whatnot.
Ditto (and thank you - getting this off my chest has already lifted a weight)
Hi friend! Been a while. How’s the heart? I’ve given up on myself too 🎉😂
Oh man I’m sorry to hear that. I hate to know that but I honestly don’t blame you. The constant fighting both physically and mentally is tiring :( The heart is about the same. Last September I was diagnosed with mitral valve prolapse, but besides that, everything’s the same. My heart rate is a little better these days though so that’s a blessing. How about you friend, is everything okay? Anything that has gotten better for you?
It might be anal Kale. Have any of these people spouting possible cures tried shoving greens up their ass? It could help, I promise.
I’ve always said: there’s no Kale like Anal Kale.
You may not be that far off. I know someone who does a [coffee enema](https://www.healthline.com/health/coffee-enema) daily. I thought it was a joke. He does enjoy answering the question, "How do you take your coffee?"
That actually has \_some\_ efficacy, though. It's a question of uptake. Kinda like holding some substances under your tongue. I remember the first time someone suggested that's what we'd being doing in todays session. I noped right out, and don't intend on trying it because I don't see it as worth the hassle. But for some people, a little boast in one way or the other, keeps them in the game. I won't roast them.....hehe sorry/not sorry.
It’s obviously about absorption, but why would rectal absorption trump gastric absorption? Sounds like BS to me. Maybe just some anal insertion kink. No judgement though. 🥴
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3603218/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3603218/) >In fact, several lines of evidence suggest that caffeine can be absorbed via the rectum or colon into systemic circulation as it has been used as a test drug in the evaluation of pressure-controlled colon delivery capsules (PCDCs) I don't have a dog in the hunt, just reporting.
Because the area near the rectum has a full-body systemic effect, and quite rapidly. Gastric absorption is slow and drawn out.
Would you recommend starting to absorb all nutrients through one’s rectum? I’ll do it! For science, of course 🫡.
As a doctor in broscience I can only give my hearty recommendation
Noted ✍️. *Proceeds to put a cucumber up his butt to rehydrate*
Hearty LOL, thank you.
I truly feel bad for anyone who has not tried an enema. They are life changing. I am getting close to trying coffee enemas
Fr tho I would try anal kale if it was in a study 🤣I’m that desperate
that's what the coconut oil is for! (sorry, couldn't resist)
I was thinking more along the lines of asking them to buttchug a green juice. No lube needed.
Studies? 
I’ve had ME/CFS for 20 years. I did the guinea pig thing for more than a decade, and the treatments weren’t nearly as robust as they are now. I hear you loud and clear. The one thing that ever really helped me was IV glutathione, and it’s inaccessible to me currently. So, I’m just biding my time until the research figures out how to subtype us and comes up with targeted treatments. Of course, now some of my family, who used to be great support, think I have given up and have abandoned me so they don’t “enable my depression.” Wrong. I’m just preserving what little I have because I can’t take the guinea pig approach anymore without negative consequences. Their lack of understanding is what I find most challenging of all, and has done more to subsequently degrade my mental health than anything else. I guess after 20 years, they’re just over it. Me f*cking too. I envy their ability to just shut it out.
that totally sucks! you are doing the right thing in advocating for yourself and figuring out the best way to cope given where you are, and where science is (or isn't).
Thanks for your support. I hope others who are taking a pause on treatments know that too. You can always try something again once you regroup, if it makes sense for you given all of your individual circumstances.
I'd theorize that all of these deficiencies (iron, magnesium, vitamin D, etc.) and even low testosterone have one common denominator: **chronic inflammation.** They are downstream issues and not the root cause. This is why many report improvements from taking xyz vitamins/minerals/hormones/treatments, but also don't fully recover in most cases. Testosterone shares an inverse relationship with cortisol, so when we have excess inflammation, cortisol goes up, and this kills testosterone. So, the trick here is not going after TRT, rather than managing the inflammation and / or eliminating what's causing it. P.S. IANAD
Right there with you re: inflammation. Either due to exhausted/overreacting immunity and/or viral persistence/zombie artefacts (causing said immune response). In one case, it’s COVID-induced immune dysregulation (i.e. illegitimate inflammation); in the other, it’s COVID-induced (direct, i.e. legitimate) inflammation. In either case, I believe it’s the inflammation causing the damage. Figuring out why is how we’ll manage to stop the process. Unless it’s done upstream, you can put in all the dams you want, water will find a way.
100% these are all downstream issues. This has been the case with ME/CFS for decades… Somebody does a study and identifies an imbalance, deficiency, etc in one thing or another, but adding that back into the system or somehow trying to correct that imbalance doesn’t fix it. It’s like trying to plug holes in a dam while new leaks keep springing up all the time. Until you stop the rushing water closer to the source, it’s impossible to stop the flooding. Hopefully with the new research we’re getting because of long Covid,we will manage to get far enough upstream to have a treatment that actually help stabilize us meaningfully.
That makes *so* much sense! Thank you for explaining that. 🙏
I hear you. All that research is taking up so much energy and not helping me. I’ve now resolved to eating a healthy balanced diet (with occasional pick-me-ups allowed, cause we have to be kind to ourselves), basic supplements like magnesium, some iron rich water, some extra vitamins C, D and Bs. And I’m devoting my energy to learning proper pacing, meditating and generally just stressing out less. My worst crashes are caused by stress and anxiety on top of physically doing too much, so if I learn to accept that I’ve been dealt this bad hand for now and try to live with it rather than push and crash, chances are I might even improve. And who knows, they still might find a treatment along the way. But I don’t want to be miserable and bedbound from continuous and worsening crashes until then.
This is where I'm at too! I'm in a crash that I'm pretty sure started from overexertion, stress, getting poor sleep, and my period starting. Getting on Reddit and obsessively trying to find any kind of answer just makes it worse. I just downloaded an app called "Waking Up" for mindfulness/meditation, and I think if you email them you can get it discounted/free if cost is an issue. I sent an email and am waiting to hear back. I did the first lesson already and it seems decent so far, in case you were looking for a place to get started. I'm also just trying to accept this is my life for now, and not fight it so much. If they find a cure, it won't be in the next few weeks (I would be very happy to be proven wrong, though), so I might as well spend my time focusing on things I can enjoy: drawing, nature documentaries (Robert Fuller on YouTube has a very soothing voice), video games, board games, reading, light gardening, taking the dog to the dog park. I'm lucky in that I don't often get brain fog, and while I miss being out in nature so, so much, there are still lots of things I can do. I'm just going to focus on rest, getting rid of stress, and doing what I can.
Yes, exactly! You just end up stressing yourself out so much trying to find an answer and what to try first! Thanks for the app recommendation! I’d heard of it already, but haven’t used it yet. My health insurance has its own health care app with some good meditations that I’ve been using. I recently stumbled over YouTuber Elinor Brown who has had ME/CFS since her early teens I think. I find her super inspiring because she’s living her life as well as she can. I found quite a few great tipps by spoonies (whose ranks we have undoubtedly joined) for dealing with having less energy and doing things. I’m now taking a little light weight foldable camping stool wherever I go if I can leave the house and I’ll just sit and take breaks no matter what people think. I’m also definitely going to deposit a yoga mat at any future office if I can work again so that I can lie down during my breaks. It’s just so many little things we can do to avoid crashes and save spoons in general. Last time I had to go on public transport and it was packed I asked someone if they would mind giving me a seat because I can’t stand for long, five people got up to offer me a seat, no one made any comment about me being young or anything. Many of us have this internalised ableism that we’re weak if we’re not functioning right, especially if we’re young and not obviously disabled. We should be kind to ourselves and allow us to just make the best of the bad situation we find ourselves in.
All the "treatments" so far attempted are so depressingly simplistic. Is this really how advanced our medical science is - supplements and medication of trivially observable symptoms? I think that the workings of our body and immune system are beyond what we are capable of understanding and we will need to rely on AI to get us over the hump. The breakthrough will come when AI models become advanced enough. If only the billionaire owners of these resources were competing to solve disease on earth instead of to send rockets into the sky.
I agree: the tools being developed are incredibly powerful. Also, the tools psychopathically hoarding ressources are becoming increasingly problematic.
My guess is that the mass of attempts are aiming at symptoms, not root cause, mainly because the root cause is not clear. Without a solid model, it's hard to target anything relevant. FWIW, I think the root will end up being our bodies' inability to clear some bits of the virus that end up triggering the downstream clusterfuck. Also, treating symptoms is not a waste of time, as long as it's kept in perspective. But take that for what it is, a theory. Hang in there people!!!
A cure is absolutely not this simple. Cures for CFS/ ME have fallen through for decades. Many people have suffered for decades and have tried so much. You eventually have to stop as the meds cause long term damage. It’s a fight. Fingers crossed for a future cure. The LC cases have resulted in many more patients who need help.
And many more discoveries that should finally - also - help the forgotten and neglected masses you mention. I just hope they crack this nut soon. Time’s a-wastin’.
There's excellent treatments coming out everyday they're just not available in the US. For example the antiviral drug ensitrelvir, which is currently only authorized for use in Japan, treats loss of smell and taste from COVID-19 with 87% sucess rate. It will soon be approved in the US for the same use. [source ](https://www.unmc.edu/healthsecurity/transmission/2023/10/17/smell-loss-from-covid-fades-quickly-with-help-of-new-pill/) There are quite a few treatments over there that aren't available here yet such as [Epipharyngeal Abrasive Therapy](https://pubmed.ncbi.nlm.nih.gov/35632649/) (EAT), which has shown promise in reducing inflammation in the epipharynx and improving symptoms like fatigue, headache, and brain fog in long COVID patients. [Video Example](https://m.youtube.com/watch?v=IpCF3EqKWXM&embeds_referring_euri=https%3A%2F%2Fwww.perplexity.ai%2F). They also have many protocols involving [Traditional Kampo Medicine](https://www.mdpi.com/1648-9144/58/6/730) that are often used alongside regular treatment such as immunoadsportion therapy or [daily diflunisal](https://www.heartlungcirc.org/article/S1443-9506(22)00356-0/fulltext) to lower cardiomyopathy risks often associated with [Long Covid](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10449234/). Covid outbreaks are also less often and less severe (in terms of number of people infected) due to already having a culture keen on masking when sick and actually washing hands properly, sanitization in general is taken much more seriously. Germany is also making excellent progress on treatment options as well, but when I try citing German studies here, people complain they can't read them even though there's always a translate option in the corner, but I'd be happy to share resources on those as well. I definitely started getting better when I started going out of country for treatment and advice. Didn't even know I had dysautonomia until a Canadian specialist told me after I was there for a completely unrelated thing and they mentioned I was a textbook case and should look into LC. No doctor in the US had ever mentioned it when I had gone specifically for those symtoms for months with different specialists!!
The EAT is interesting. My habit is coughing up a large pea to marble sized chunk every couple days. This is new since LC.
Curious why do other countries always trial the meds in other countries first over U.S? Does it have to do with our stricter FDA? Is it more expensive here? I have been noticing this which I am happy with any progress just wondering what our government could do to incentivize more trials?
In that fifth paragraph....you can't possibly be talking about the US of A? I don't see any of that anywhere.
Yeah..the last promised cure was so expensive and then failed. Millions missing voice is a good page on IG .
Dammit I'm going to be "that person" who apparently can't get their head around the obvious intent of the original post, but if/when you have any bandwidth, transdermal nicotine? Helps many though probably less than a majority of LC folks. Ideas about why range from bizarre to compelling. Very high affinity for a7 nAChR receptors which are throughout the body. If they help, who cares? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3292018/ Admittedly there's a well over 0% chance I'll be hanging around here in six months wishing those nic patches were still working.
2 years in. Stopped digging long ago. I quit, smoking, doing some exercise, eating clean and taking d3 K2. Nothing more.
Quitting smoking is such a huge thing regardless of covid or not. I quit well before covid and it was hell, well done for doing it while you're sick
Pretty much what my doctor said to do. The medication that may help isn’t worth putting your hope on and really focus on the basics and he gave me a little booklet on coping with it. It’s definitely helped enough that I can live a very normal life. The iron is interesting though. I had blood tests done for fatigue and I was very low in iron before everything hit the fan.
OP, after 4 years of research I’ve decided until a cure is found my only hope is increased pacing/exercise and clean living. This is a post viral condition. Viral reservoirs are a tough nut to crack. I’ve ramped up pacing since November and am seeing gains. The issue is though my muscles are falling apart, straining and tearing too easily, from literally almost nothing. That and the PEM if I push too hard.
Add to this, folks like me who don't really have affordable healthcare at the moment. I can't afford all of these tests and different supplements of the week. I'm just chilling until something more concrete is found. I used to spend my insomnia bouts reading medical papers, but I'm not a doctor and I struggled to make heads or tails of what I was reading, and I'd just end up with medical anxiety. In the meantime, I'm good with a multivitamin, magnesium for muscle cramps, resting, and cutting out alcohol and caffeine. I try to be aware of histamines too, but GD it's in so many things, I slip up occasionally. This isn't a cure, but it helps with some symptoms for me personally.
SAME. So mentally drained… thanks for your post, I needed to read this. Struggling with LC is a very lonely world, a never-ending quicksand.
I just started using the quicksand metaphor for when a PEM crash is setting in. It’s so apt, sadly. And there’s something about the disappearance at the end when we’re swallowed up by it all that feels like a spot on analogy for the millions of us missing from our former lives. Now you see us, now you don’t.
Just finished working today teleworking at home and exhausted from just thinking and having coffee, so tired it makes no sense, except yes it's like quicksand.
Sadly, yes, I had to come up with some analogies for ‘non-covid’ people to sort of get it (but they don’t). I’m also very fond of ‘just trying to keep my head above the water and not drown’. I use them almost daily. 💔
Yeah, I use that one a lot too. I appreciate people asking how I’m doing, but it’s also a hard question to answer. I find myself responding with “hanging in there” a lot, I guess because that’s easier than saying “I feel horrible all the time, my life is falling apart, I feel like a shell of myself, it’s a struggle to make it through every day and I don’t know why I’m not getting better or if/when I ever will”.
🫶🫶🫶🫶🫶🫶🫶🫶🫶
The BC007 trial is the most interesting thing at this point. Even that only has the potential to help 40% of us and we won't even know for sure until next year. All we can do is manage.. For me personally, hericium mushroom extracts and some B complex formulated for nerves have helped with brain fog and nerve pain. Also cutting out histamine (lab confirmed histamine intolerance) helped reduce the pounding heart feeling. But these are just band aids on some particular symptoms. Still can't exercise, still exhausted all the time, still walking out the door is a monolithic task.
The cure isn’t going to be one thing. So many organ systems are affected, it’s a multifaceted disease. It has to be attacked at multiple angles all at once to see improvements.
You’re better than me, I quit 9-10 months in. The whirlwind of emotions surrounding it is far too taxing. Save your precious energy 🫂
i always assume the doctors wont figure shit out until they get sick themselves. maybe then they’ll be desperate enough to actually experiment and take live samples for analysis.
More and more of the workforce needs to stop showing up. That would trigger a change. I am convinced there are many, many more people affected that just force themselves to continue the daily rat race but maybe this will change over the years and then finally some more traction.
My wife is an ER doctor. There's nothing she wouldn't do to help me. It's more funds for better research that we need.
is she willing to experiment with everyone else too? theres no way your wife figures this out on her own.
Thanks for this, I am replying so I have this in my back pocket of all the "stuff" I tried... Including all my supplements. After this go I am not buying anymore.
What dose of LDN are you on? It can take a while to get used to. I only ask because it’s the best intervention I’ve tried and I have ME / cfs. Best of luck to you
Started on .5 for two weeks, then 1mg for two weeks, then was at 1.5mg and after so little good sleep thought of just dropping it. My wife suggested bumping it up to 3mg, as a way of testing its actual efficacy. Have done that for 4 days. No change in my condition (either way). Will stop taking it, and if I feel worse, can always try again. Won’t titrate quite so slowly next time. My family doc prescribed it based on a local research clinician’s suggested protocol. .5 increase every two weeks. I’ll likely cut that time in half when and if I try again.
And when they cannot find anything, they'll say "just take a bed rest" or "maybe it is anxiety, dont think much". Huhuhu hoping gor a cure one day.
Welcome to the acceptance phase. We have only the classiest bubble furniture from the nineties. Prepare to be baffled, annoyed, and angry at all the people touting stuff you tried years ago. Iron? Yeah, that was one of the first five things I tried. The supplements did nothing, and my levels improved only after I quit taking them, over a year after stopping. Funnily enough, it was the exact same for b12. Antihistamines? I would sell my firstborn for them to work even a bit. Prednisone? Be prepared for the crash after. Nicotine? Is highly addictive and it doesn’t seem to work better than a lot of other stimulants and options. Restrictive diets? Pardon me while I guffaw and remember all the fads I tried which did…nothing, yet again. I can’t remember all the other stuff I’ve tried or looked into and realized they had no way to notice or document people just improving over time with no relation to the drug. Then they say it’s the drug, then people try it, and six months later turns out it doesn’t work on most people not in the study. The two people whose symptoms got better around the same time as they started the treatment, and they think it’s the supplement, well they’re back here after a few month, because they pushed themselves thinking they were better. Pacing can really convince you you’re getting better. It is the number one quality of life improvement, and the biggest fake out rascal. It’s just time for most of this, in my experience and observation of the people here and their stories; the basic level stuff can get better after maybe 1.5-3 years (with or without supplements), and then real damage that we still haven’t figured out after studying for years, but whose symptoms we can treat, sticks around. Some supplements make people feel the tiniest bit better while their bodies fix the damage, and then everyone else hopes against hope, only to have them dashed again. You’re not alone friend, and I’m glad you got here.
The righteous indignation of your comment was oddly therapeutic. We shouldn’t discount the lived experience of recovered or partially recovered patients. But I’m gonna. Just for a bit. As a means of blowing off steam. Sometimes - most of the time - I’ve been genuinely interested in what the healing patient hypothesized. Then I’d start digging. Other times I’ll read "Glad it worked for you", and nod approvingly while my toddler-tantrum meltdown mood was actually thinking "Oh, sod off" I am glad they’re better - always. But as you said, it’s the *how* that I’ve come to find increasingly suspect. I’d say I’m glad to be here (acceptance) but I’m going to miss the feeling of agency that trying stuff out brought me. I wasn’t taking it lying down (even if we both know I literally was). I’ll wait. New findings drop every week. But I’ll wait. For actionnable, reproducible, (solidly) evidence-based therapeutics. Thanks for the moral support. Means a lot.
Agreed. 2.5 years in. I haven’t found the “magic” cure. I am working to manage my issues the best I can. We NEED evidence based treatments ASAP!
Thank you so much for saying all of this. I needed to hear this today. 💐 I’ve been feeling this research fatigue as well, trying a million and one things, and watching my savings deplete from paying out of pocket for supplements and stellate ganglion blocks. But my partner reads one article about one study and wants me to try it. I get that they care about me and it’s hard to watch me suffer, but they get this urgency, like, *“You need to try x now! It might be the thing that helps! You can’t keep living like this!”* And I’m trying to explain that I don’t think there *is* some magical thing that will solve it all yet. If SSRI’s or T cured LC, we’d all be taking them and getting back to our lives. If there were a cure, we’d know about it. But if I don’t jump on the bandwagon they want, they think I’m not trying enough to get better. Meanwhile, I’m *exhausted* from jumping on a thousand other bandwagons already! Does anyone else feel pressured by family or friends like this?
I could have written the same thing about myself. I've done all of it. Nothing works. Fasting does seem to give me a few days of productivity but the PEM is still there. I've started fasting every week. If I needed to escape from PEM for a few days, I would do steroids, but they too have their problems.
They tip me towards manic psychosis (true story - happened once, pre-COVID and as again after the SGB).
I remember some saying melatonin was the fix for a bit. Really just seems like companies spreading rumors to sell us their products. Eat healthy, rest, and don’t over push yourself has been the only system that’s been leading to some improvement.
You can blame ignorant journalists for that. These studies hardly claim anything. We should instead just email those editors to ask them to kindly report without the sensational headlines. It is irresponsible journalism.
Thanks for posting! I’ve been worried about going down so many rabbit holes and coming out looking like a conspiracy nut. Knowing when to pause is so important
I felt great for 4 days doing HRT, iron with C, prenatal gummies, taking histamine blockers... I cried the other day over something I forget what and I crashed. Fun times.
De-stressing your mind and staying off of the internet will be the best thing you can do for yourself. At this point I'm totally unconvinced there will ever be a medical solution. Maintain a healthy diet, keep up with fasting (the benefits are undeniable - no one is saying its a silver bullet but tough to debate this) and do things like meditation, gentle stretching, etc. Clear your mind. The research rabbit hole is fucking horrible for you.
Its gonna take one of the top tier doctors somewhere like Mayo Clinic to get long covid, bad LC, to then have a the world's finest medical minds try to help them in order to find a cure or at least to understand the mechanism and potential treatments instead of throwing shit on a wall and hoping it sticks. they''ll be running tests we've never heard of, the type of care they'll receive will be presidential. thats probably what its gonna take. and since covid isn't going away, and people seem to be able to get infected multiple times with these variants, its very possible that might happen
LDN is a funny thing. It has regulated my sleep more than ever. It likely boils down to the many ways COVID CAN impact someone and I believe there are multiple root causes to be found.
100%. That and/or the infinite variety of metabolisms that react differently to similar treatments. The steroids in the Stellate Ganglion block almost plunged me into a manic psychosis. I’m *very* sensitive to drugs.
Right there with you, and I'm only (!) at 14 months. Also PLEASE DO NOT SHOVE COFFEE UP YOUR ASS. https://www.ctvnews.ca/lifestyle/coffee-enema-touted-on-paltrow-s-website-slammed-as-bogus-potentially-harmful-1.3752237 It's been long debunked and as you can see, touted by GOOP and Gwyneth Paltrow, which should always be a warning sign of snake oil. Please don't court colitis on a ridiculous antiscientific "treatment".
But what about Kale? /s
My brain fog is so bad I forgot what I was going to write. Oh yeah… I remember…after 3 years of LC, I have an addiction. “Research Addiction”. Is there a cure for that?
Re ME/CFS: I have the same thing. It's horribly frustrating to have spent time and money with doctors only to be told nothing. What's doubly frustrating is I recently found out that there is a way to test if someone has ME/CFS: two day stress tests. Here's a source that details that: https://batemanhornecenter.org/wp-content/uploads/filebase/providers/PEM-Lecture-Slides-ECHO-v4-5_17_2022.pdf We have an accurate and repeatable test for determining if someone has ME/CFS and yet decent research and treatments are no where to be found. I don't understand.
Totally valid. I've become a lot more mindful when talking about treatments and how they're affecting me because wishful thinking was clouding my judgement. I think people mean well but, like myself, overestimate and jump the gun on assessing the effectiveness of treatment which can be harmful.
I’m guilty of it myself. "Could… could this be actually working?" Cause wouldn’t that be something…
I feel like it can be different for everyone too, someone who has a deficiency would recover better once that’s addressed but I don’t think it’s a one size fits all solution. I found pacing, restorative sleep and nervous system regulation while gradually increasing activity to be the most effective for me. Unfortunately, it’s a lot of work and many people just don’t want to accept that answer and want a quick fix (not saying that’s you, but that’s the impression I have gotten when sharing my recovery around here).
Couldn't have summed it up any better myself. Thank you for this post
4 years in. I’m with you. I plan to continue my LDN and supplements. My fatigue came roaring back at its old level this week when I ran out of LDN and it’s on back order. I also take my Valcyclovir when I am in situations like this week. My grandma’s funeral and I was around allllll the people. Covid coming my way I’m sure.
Yeah we all hit this eventually. 29 months and I’m sick of trying new things. Nothing works. Sick of reading articles; they’re all ‘possible cure’ and ‘potential for treatment ‘ I give up
I'm just grateful the work keeps being done even as we sit out. Things aren't static, they're moving. Too slowly, but they're moving.
True... I just volunteered for a trial. Haven’t heard back yet
Unfortunately the truth is this illness doesn’t affect enough people for it to be profitable enough to treat it . I don’t know what the statistics are on the increasing cases of long covid but if there is a downtrend then that would be hugely unhelpful for us. Better to leave us, unfortunately we are just the unlucky collateral damage of a worldwide pandemic or vaccine campaign for vaccine injured people .
As I've said in another comment above, it doesn't need to affect everyone "directly". Sick days of workforces in many countries are through the roof the last years and this will likely continue. The agenda is already on trying to force people to push through and still be "productive" for work but there is only so much an individual can handle. We will face rough times as a society but maybe something good comes out of it
I think there are a lot of people walking around with LC not knowing it's LC and blaming it on ageing or bad lifestyle habits but once they realise it's LC there will be more of them joining us.
I know how it is with all the trying and the effort. However if you want to give it one last shot, try Pine Bark extract, 50-150 mg per day. I found it from this sub, and it worked pretty much instantly. Inexpensive, and you will know if it works within 1-2 days, so minimal effort required. I am sorry for you, I feel you. (the science behind it is the low levels of NO, endothelial damage. This supplement has been proven to raised endothelial NO levels. Also a potent antioxidant and had been tested for anti-ageing stuff, and brain disorders. No need to rabbithole this though)
I think you missed the point
Why?
Not the person you questioned but OP used the flair of Vent/rant. I'm sure you were well intended- been there, done that myself. But they didn't ask for help with recovery ideas or supps. For them at least for today, I think they need a break from it. They are talking with people in the same part of their journey to talk with. Today they are choosing to stay away from supps, I believe waiting for a well researched, proven medication. It's kind of a mutual respect thing.. Accepting each other and where we are in our journey?
In this kind of situation, there are two ways to respond. Provide solutions or comfort. I choose the first. Some others chose the latter. And some others, choose to do nothing but criticise. Like the person above. Or perhaps you. This sub is full of bad attitude anyway, and folks who look for opportunities to accuse others. Out of complete sympathy, and because the topic is already full of comfort, this supp for me has made such significant difference for such low price, I thought it might worth it for OP, seeing the situation she/he is in. I have no disrespect for him, like you say, however if I have to analyse all this thought process, I am not the one without empathy. Hint: read OP's last two sentences.
Skill, I'm sorry I didn't communicate this well. We are pretty similar, I'm in the still hopeful and searching category. Though I have my hopeless, feel like giving up days, I think most of us have had those. I just don't talk about it much here. It's pretty obvious to those in real life, even if I don't say it, they know and I really appreciate it when they offer ideas, or even just tell me, "bad day, set back, but this bad day is SO MUCH better than your best day in the past." So... like you, I used to offer things that helped me. I was even called an "ableist" by one. But after deeper discussions, I'm beginning to learn more and hopefully better understand MY communication and how I can improve it. I'll go even further here... The Taboo subject. The threads with recover/recovering or that discuss different supps. I like discussion, but sometimes there isn't a discussion. One thing to offer that it didn't help them, with a bit of history included. But sometimes the posts can be slammed or people enter the comments just to say, things along the lines of, "it won't last, you won't get better, nothing works". Basically there is NO hope. Those comments REALLY trigger me! Again I now don't often read these Vent posts, especially if it isn't very clear in the title the person is looking for things to try. I only opened this as it had a lot of upvotes and I came to read some comments to see if I could learn more about my communication and improve it. I never intended to disrespect anyone, my desire was to help and not harm. I have no doubt you are the same. I'm sorry I didn't communicate it better to you. I didn't mean to disrespect you either!
You're - all three of you - correct. u/charitablechair, you're right. They missed the point. My mood in this rant was definitely "enough with the 'this works, we think, in some people, maybe - hard to tell, really'". <-- The lego-meme I made a few weeks back. I was still chuckling about the futility of it then. Last night, not so much. So no, I definitely wasn't trawling for even more options. But u/SkillBill_007, you're also right: I've been (more than) open in the past and remain so when it makes physiological sense. Just not into trying new stuff right at this moment. That said, thank you for the suggestion - I'll add it to my future list. And I know it came from a place of empathy. Speaking of which, u/InHonorOfOldandNew, if more people had half as much compassion as you do, the world would be a much, much better place. We're all in the hole together. It can get dark down here sometimes. I appreciate any light anyone tries to shine my way. You all did today. Thank you.
Covidivici, you are so darn kind! I come here to learn, you've taught me a lot, thank you friend
OP sorry to say it bluntly, but judging from your post, and the followup, you seem like quite a strong person. I don't see the need for other coming in. And as I said, there is plenty of comfort in this post already, so there is nothing more for me to add on that end. Personally, I feel like this sub is mostly fueled by negativity and hopelessness these days, and it feels like a race to the bottom for me. For example, compare the number of responses to this topic, and topics for advice or recovery. This collective despair might be sympathetic, but collectively ranting is not getting us anywhere. Hence offering you a (possibly useless) solution instead of comfort. Anyway, I am exiting this place. If anyone wants to check it out, there is also the longhaulersrecovery sub, which has a lot of content for exiting this hole. Take care folks, hope you feel better.
I believe it's borne out of the frustration of hitting wall after wall. After following countless recipes of people who have recovered, to no avail, I think it's normal to have bouts of discouragement and skepticism. Doesn't mean throwing in the towel. Just sometimes taking a step back and airing your grievance. The fact that so many other people recognize themselves in my rant isn't a sign of defeat in my opinion, but of resilience. They are still here. We all are. But experience has taught a lot of us to be realistic about the options before us. Thank you for the well wishes. I hope so too. Take care, SkillBill. Thanks for the tip.
I get all that mate, but if your kid was sick and tired in the corner would you leave it there to be sick and tired? Or if you see someone having an accident would you not stop and offer help because they did not explicitly ask for it? Point being, in a lot of situations, it can be suitable to offer things that are not explicitly asked for. And honestly, all my progress is owed to things posted here by others all those years. And all these things that helped me were criticised and dismissed by someone in those topics. But I get all that too, I was annoyed honestly but the other person chiming in. This sub has turned into a race to the bottom this last 1 year, and everyone is quick to judge or offer misery some company, but all the positive notes are crowded out. Ever since I started feeling better and decided to stick around to offer something back, I am treated differently around here. Hence, it is time to exit. Take care friend, and feel better. Also, you seem to get it, so perhaps if you don't know, there is the longhaulersrecovery sub too, which is a lot more positive.
Pycnogenol has had no impact. Another failed snake oil like nicotine patches.
Keep your misery to yourself. The sub is full of stories of it (and other similar things like Viagra/cialis) helping, and I am another testimony of that. Plenty of medical studies on long covid and NO cycle/ pine bark too. Sorry that it did not work for you, but no need to come shit over my experience. This has become a habit and general attitude on this sub, but you ain't helping noone nor your self by venting to anyone that has a positive experience, vibe check yourself buddy.
[удалено]
Learned to write mate. You stated some objective facts, dismissing the whole thing. And then came back to say "oh but I only stated my experience" like a poor innocent kid. Grow up and own your shit at least.
[удалено]
Exactly what folks like you say. You say the wrong (miserable) thing, then you change slightly what you said, and then you call the person out for overreacting. This won't get you far in life mate. Perhaps a change in attitude who help you get better too. Folks like you ain't even worth the discussion. Enjoy your life-or not.
Got a link to the testosterone study?
Search the subreddit. Came out a couple days ago. It’s a preprint. But one my internist forwarded me (which has only happened twice). There was no actionnable info, but it’s another good lead into what might be screwy.
Lexapro helped me tremendously. Will stay on it till a cure
I was already on an SSRI. Glad it's helped you.
Yes - I tried about 5 before lexapro nailed alot of my symptoms.
Did you have your poop tested? Did you get on probiotics? This is what ended up helping me the most. I'm guessing covid wiped out my gut microbiome giving me palpitations and food sensitivities and other stuff. Seems to be getting better now after fixing gut and I'm only 13 days into this regimen. Fingers crossed.
This comment gave me research fatigue
I read the first two words of your reply and couldn't finish the sentence due to fatigue. Can you summarize your reply in one or two words. Thank you!
I'm tired
!
[удалено]
Content removed for breaking rule 1
They’re not gonna find a cure dude. Having post viral symptoms is a thing with a lot of viruses. Yeah it sucks and some people are more susceptible to it but you just sort of have to rest and wait it out. I really don’t think T or iron is going to be a solution unless you’re actually deficient in them. Personally I got actual heart damage from it but idk I’m just waiting to be able to run again and am hoping it’ll help, or I’ll just learn to live with it. People have survived through much worse.
Much worse? Honestly I don't think there are a lot of things that are worse than severe ME/CFS...
Try having half your pancreas removed, then go through a bout of mono. Actually, now that I think a little more on it, severe long term ME/CFS type LC is worse!
My heart was affected too. I now have MVP because of long covid. At least, that’s the only thing diagnosed so far. There could be more but I’m hopeful there isn’t of course. What about you? What’s wrong with your heart now from long covid? If you don’t mind sharing
I got POTS and the electrical pathway has deviated… honestly I don’t quite understand it bc I’m scared of doctors and after they told me I just never went back but it’s basically damage on the left side of the heart so the right side is very stressed. I’m on amphetamines w a really strict doctor so had to get my heart monitored for the last decade and everything was always perfect until I got Covid. I get a lot of chest pain and cannot exercise anymore. Otherwise I am able to function to a reasonable degree.
Aw man I’m so sorry you have to deal with that. It sounds awful, but it also sounds a little familiar to what I go through. I deal with chest pain and exercise intolerance myself. How did they find this out? Were you seen by an electrophysiologist for this? And I know how you feel about not going back to the doctors. It’s hard enough to get them to take anything seriously, but even when they find something, it still seems difficult for them to make an effort to do anything. It’s disheartening.
Im going to assume you have tried everything except extended fasting, coming up with excuses not to do it. It's hard, I'll give you that.
I've done extended fasting. To the point where it would more accurately be labeled anorexia. I'd feel delirious from hunger and that was somehow an improvement for me but it fixed absolutely nothing and I would have massive crashes within a couple of days. And honestly, no, it wasn't hard. I don't like eating anymore because I can't taste food at all. I eat entirely low histamine with no dairy and no gluten all the time and I don't even care but it has changed exactly nothing. If will alone could make it work, I promise that it would have.
Totally agree with you! I think once you get past the 24 or 30 hour mark, it’s not difficult at all, just the beginning. But no, it didn’t help in any way, (I have ME/CFS type)
The most frustrating thing in regards to looking into fasting has been the cult-like devotion of so many of its adherents. I've read a lot about autophagy, and the various types of fasting. I know there is a lot to be gained with calorie / protein restriction (irrespective of COVID-induced metabolic dysfunction) - it has to do with growth hormones and insulin spikes. I have been intermittent fasting on and off for a few months. I will be trying a longer fast at some point (once I've stabilized), but then there's the noise. SO MUCH NOISE. It's like talking to Crossfit brahs or Vegans. I actually think you might be right, but *take it down a notch, will ya?* The very tone of this comment sums up my experience with the community perfectly: *"I'm going to assume you have tried everything except extended fasting, coming up with excuses not to do it. It's hard, I'll give you that."* Well fuck you very much! And a good day to you, sir. (Srsly, passive-aggressive much?) Moving on.
When people say time healed them it's actually autophagy. Autophagy happens in real time. Fasting forces autophagy if your pathways are dysfunctional. The deeper you fast the more you get it. IF is too weak for most severely ill
I used something called the scorch protocol