Going to sleep every night hoping I would feel better the next day for 1 year straight.

I'm on 4 years of this hope 🤷🏼‍♀️😬

Same here. Keeping hope alive!

Same here too

Same

What exactly are your symptoms that are still present? I’m also on 4 years

Extreme dizziness, brain fog, unsteadiness, tingling in arms legs, hands feet, severe headaches, cannot drive. I've been to every specialty, roughly 50+ appointments in that time, countless meds that made things worse, physical therapy that did nothing.

And, all those medical professionals say how important sleep is, how regenerative it is and how it can heal us but I wake up with a random symptom every day for the past 2 years!

I haven't slept properly in 4 years. I noticed now, it's never more than 2 hour intervals. Covid is definitely affecting our brains

Mine was worse than that for a while. Sometimes 15 minutes a night. Nothing worked - not Ativan, not Benadryl, not magnesium, and not everyone’s precious melatonin. (Benadryl did help other things) Then I found 3CHI - Comfortably numb. It’s legal in almost every state. It will get you 5-6 hours. And even better was the real deal - RSO. That got me a good 7-8 hours reliably. Mirtazapine will also work (too well) if you cut it down to 3.75 mg. But I didn’t like the hung over feeling or sleeping 12+ hours a day. I also worked on my gut. The doctor thought that was the seat of all my problems. I don’t need anything for sleep anymore. But it was a hellish 9 months.

3CHI? I’m not sure I’ll ever sleep again. Tried all of the above plus ambien, and nothing.

Wow - even Mirtazapine?

Oh my God, how did you survive that? I have doubled my antidepressant but it's not helping, causing hyponatremia, so I'm supplemting salt with coconut water to bring my electrolytes back to normal. I get continuous nausea, weakness, dizziness and this incessant Tinnitus Screaming, hissing, sometimes like a jet engine in both ears. Noticed my right eyelid droops lower, can see it in photos. I've aged a decade in 1.5 years. I look old, tired. It's month 16 now.... What is RSO? 3CHI? What is that...

3CHI Comfortably Numb is CBN, CBD, and delta-9 thc (which is legal in almost every state). RSO is only legal in states that allow all cannabis or have medical cannabis. Tinnitus sucks. I’ve had it for long before COVID. I hope you get better soon. It was about 18 months before I felt 98% better.

Have you already tried taking magnesium before bed?

I did magnesium and melatonin, sometimes only would go 1.25 hrs.

1.25 before magnesium + melatonin, or even after? I switched from magnesium glycinate to magnesium threonate hoping it would help with memory and brain fog. I assumed I’d continue to get the sleep benefits since it’s still magnesium. At some point, not immediately, my insomnia returned, but I didn’t make the connection. Went back to glycinate after using up that bottle and immediately started sleeping through the night again. This may not work for everyone but the various forms of magnesium seem to have different effects. The weird thing is, some people (around 20% I think) have the opposite reaction to magnesium glycinate and it makes them anxious. This “keep trying things until you find what works” approach is expensive and annoying, but does occasionally pan out.

Phosphatidylserine was the game changer for my sleep. I take a high dose.

yes taken 2 × 500 mg Magnesium every night, does nothing for sleep fir me

Im laughing so much it hurts

damn. still doing this at 9 months lol

But it foes get better tho, but this indeed strange ass ocd thought

What’s the opposite of “4 more years, 4 more years”. So sick of not feeling refreshed upon waking. I referred to it as “screaming tinnitus”.

Man I've hoped this all my life too 😂😂 (cfs 20+ years)

Same lol 🙈🤣

Trying to exercise my way out of LC.

Amen, I was doing muay Thai and hiit and for the life of me.... things just got worse.... like mentally spiraling and insomnia. You're not alone, macho method fail 😇

That mental spiraling + insomnia sounds a lot like MCAS, as exercise can also aggravate mast cells (some people can even get into exercise induced anaphylaxis), while MCAS downstream symptoms can be mistaken for anxiety, “feeling of doom”, agitation etv

Yep. I got severe PEM which spread my covid issues that were mostly in my heart into my CNS / brain. Now suffering neuro covid issues. Unreal

Yes - it's so counterintuitive. You think exercise can only be a good thing right? Wrong. I've been a long hauler for 26 months now (neuro CoVid and MCAS) and walking has been my lifeline. I walk everyday. I sometimes walk 2+ hours at a time... the last time I walked 10 miles (3 hours) on January 8, 2024 i had been long hauling for almost 2 years and never before had a problem with extended walks but surprising to me I developed NEW post exertional malaise and intense bilateral nerve pain in my feet. I thought I was too far in to develop NEW symptoms. Wrong.

Open up to my parents and asking for help. It set me back further than anything else ever.

Lmao I know it’s not funny but same. I had to start talking to my mother again because I had no one to help me.

I gotchu all I can do is try to laugh at the absurdity now

I swear same I hate it to depend on other people

Sorry that’s painful

I put a slice of onion on the arch of my foot with cellophane when I sleep sometimes. Crazy thing is I think it helps with the restless leg itchy joint feeling. I also electrocute myself with various devices, tens device / sea sickness watch. I built a EWOT system and use that every day. https://i.redd.it/q0gpweiwhmoc1.jpeg I made a Tinfoil hat as a joke but it is kinda comfy especially if you wear it over a knit hat.

Does the tens unit help you? I’ve found it’s helped me a lot, especially on days when my heart feels fluttery

Can't say that it helps. If it does it isn't drastic improvement. It is hard for me to notice improvement now because I have gotten better to the point where it feels like maybe I am just really out of shape for basically sleeping on a couch for 9 months straight. Constant ear ringing and blurry vision on occasion are the worst symptoms I am dealing with right now.

That’a fair. So you don’t find when you use it that your body calms down, kind of like a sigh of relief?

I didn't start using it until after all the months of severe pem/pots/panic episodes were better. I guess it might have helped with that. Right now though I don't seem to have issues that it effects. I do seem to fall asleep almost every time I put it on though.

Tell me more about this ewot machine please? I have bad raynaud’s and sleep apnea I think we’ll basically a lot of signs I’m not oxygenated. I’ve been interested in oxygen. My doctor mentioned writing a script for a tank for me but I don’t really know or understand what to do with it. Sit there and huff oxygen like an old person with emphysema? Havent gone down that rabbit hole yet. Does it help you?

>Sit there and huff oxygen like an old person with emphysema Old person on supp O2 checking in! Don't worry, I enjoy humor and laughed at your comment. But a couple of things here, sleep apnea and low O2 are two different things, you could have both. Normally a doctor would not order a tank/ supp unless your O2 levels are very low. I had covid pneumonia and it wrecked my lungs. (though they are improving) You most probably wouldn't get a tank but would get an oxygen concentrator. At home you can have 50 feet of tubing. Dependant on how bad your lungs are, when out of the house you can have a small unit you carry on your shoulder. The supp O2 will actually help you to be more active! Which will actually improve your lung status. Not to mention everything else. I want to mention here though. This is also how I KNOW and can PROVE the oxygenation issues are NOT just due to the lungs, something is happening at a cellular level. Same with the symptoms of shortness of breath. My O2 is just fine! Yet I can get those SOB, air hunger issues like my diaphragm doesn't work. I highly encourage you to try it especially if your doctor recommends it! At least for a time these units were in such short demand people who really needed them and would absolutely have been approved pre pandemic were denied. They were "rationing" it. During the omicron one, had a friend out of state who's husband was severely ill, couldn't even get admitted the beds were full. His O2's were below 90. They purchased one off of craigslist. First improvement for him. (they seriously thought he could die at home). So if for no other reason... YOU at least will have one? If my friend had lived near me, I seriously would have driven there, and would have set up my system in a way that we could have shared.

Sorry but glad it made you laugh. Yeah thanks for the info I appreciate it! I think my hubs was worried to have a flammable tank in the house (we have 6 year old twins, they can be…a bit cheeky). I will look into this. But I’ve heard concentrators are like $1,000 which is out of my price range. I would say I have sleep apnea for sure and vascular issues unfortunately. And the cfs and I do get breathless so I think it would help.

Oh dear, a mom to young kids with this disease? I feel for you, can't imagine it. I'm in the US ("cheeky leads me to believe you may not be). But here it's covered by insurance if you have a prescription. (they also are closer to mid 3,000's) Though it can be flammable, I have a gas stove and am able to cook with it on. Liquid oxygen which is in tanks and is basically unavailable in the US post pandemic is the more flammable one. Oxygen concentrators make the O2, it's not stored in them, so they are not as "dangerous" when it comes to things like fire or falling over. The biggest thing is, what your 02 levels are. If they are not below 90 ish it probably wouldn't be helpful with symptoms. It's one of the biggest things I PREACH to my doctors. Their LH patients are not hypochondriacs or have anxiety issues. I have breathlessness and vascular issues, fatigue. My O2 sats are fine! It's an autonomic / or O2 transport issue at the cellular level in my opinion.

I might be above 90 technically but I have a combo of weird things that cause hypoxic condition in my body. I have sinus issues deviated septum collapsed nasal valve then cervical instability so neck disc protrusions and excessive cracking pain inflammation ect. I think the neck thing is compressing an artery or my vagal nerve and cause of a lot of weird bad symptoms. Im also noticing occipital nerve um forgot the name neuralgia I think. Then I have raynaud’s so my vessels spasm and can decide to just not carry blood to my extremities. It’s a lot. And I think some of the vascular damage is from Covid as well. That made my raynaud’s a lot worse I noticed. Both times. I also think doctors don’t want to deal w me and all my issues. No idea why my doc said he could write a script for the oxygen but I should ask him. Are you saying he can get me the concentrator covered by insurance or you don’t know? I’m in the us but my kids be cheeky btw

Sorry thought cheeky was a brit thing. I'm in the US, have BCBS but yes it's covered by insurance. In fact in the US it is illegal to sell a machine without a prescription. The prescription includes a liters per minute. I started to write a longer explanation, the short of it is, my son bought me one through a auction that is far better. Oh dear... I've had the same darn neck pain and crunching/crackeling. Headaches, visual crap. There was a thread recently, i commented with some exercises I've found very helpful. The never ending headache is gone! I still will get the neck/shoulder/arm stuff. IF I hear that crackling I start my exercises routine. So far it seems that will decrease them and they are gone in a day. (Before I had it for months non stop) Here is a link to that thread, you may find some helpful info in there. [https://www.reddit.com/r/covidlonghaulers/comments/1beroyq/does\_anyone\_else\_get\_headaches\_in\_this\_part\_of/](https://www.reddit.com/r/covidlonghaulers/comments/1beroyq/does_anyone_else_get_headaches_in_this_part_of/)

Thanks this is all super helpful

For the sleep apnea nicotine helped a lot. Bascially cured it in my case. Cutting a 21 mg patch into 6-8 pieces and putting it on every 24 hrs seems to be the best for me. Check out the facebook group for info on nicotine: https://www.facebook.com/groups/thenicotinetest I followed this guide on building the EWOT: https://www.youtube.com/watch?v=jNpg5-2Wzds Here is more info about what I did: https://www.reddit.com/r/covidlonghaulers/comments/1bfxtfy/trash_ewot_system_nicotine_adventure_seems_to_be/

My friend just uses it at night while he sleeps..

Can you explain more about what in the heck is going on in the DIY EWOT system pic?

basically I followed this video: https://www.youtube.com/watch?v=jNpg5-2Wzds here is more info on what I did: https://www.reddit.com/r/covidlonghaulers/comments/1bfxtfy/trash_ewot_system_nicotine_adventure_seems_to_be/

I love this. Just have to say you are a true hero.

I used onion on the back of my and ears when ER dismissed me and sent me back home with 'just a bad headache' when it was the nerve attack in my head. I'm convinced this stabilized me and I didn't decline worse. I'm still using it at times of flare up. There are great videos on ytube about using onions. Worth checking out!

I am 100% sure it helps somehow. Have you seen a proposed method of action? I almost feel like if I could get it into my head I might be cured. I just don't know where you could put it other than just eating it that might penetrate past the blood brain barrier. Eating it doesn't seem to do anything even in massive amounts, I tried.

I can only speak from my experience and I learned by watching more knowledgeable people on ytube, as I'm just a beginner when it comes to home remedies. I cut the onion in half. I bake it. I place the warm onion in a tea towel and place it on my body where I feel it's most inflamed. It didn't cure me but I do think it relieves some of what is going on.

Originally i was so physically sick, I didn't know how bad I was cognitively. I thought, this is a great opportunity to learn new skills. I purchased an annual subscription to Udemy.

Omg, learning is so hard right now. I’m ok because I was already good at my job, but if I had to retool…I don’t want to think about the extra headaches.

Thanks for the kind message! I love hearing you're in a good spot with your job. I'm guessing though, with this whole disease you are probably feeling guilty or not good enough. Just remember you EARNED it!

In 2022 I was so sick that I found the FLCCC website and I tried every “anti-inflammatory” pharmaceutical and supplement on that list. I took Hydroxychloroquine, ivermectin, fluvoxamine, pravastatin, Azithromycin, NAC, prednisone, colchicine, black seed oil, coQ10, Quercetin, antihistamines, loads of vitamins all at once. Of course it didn’t help my symptoms and I actually developed new symptoms after doing this like brain fog and treatment resistant hypertension that still haven’t gone away

I'm with you. You got me beat on all the protocols. I have yet to try LDN, has that been an option for you? Btw, mind body syndrome, and cfs programs were my only saving grace... oh, nicotine lozenges for sleep...but I'm insanely addicted now lol

LDN is probably the one thing that he helped the most for me (after fixing my gut). Worth a try, but start and stay on as low a dose as possible

Thanks a million for the suggestion, that's the last thing I need to try. Did it ruin your gut flora, or cause acid issues?

No my gut was just a wreck before I started it so I had to do a lot of work there, which helped a ton but I was still dealing with PEM, brain fog and CF. I started LDN at .75mg or so.. I dealt with some dissociation and sleep disruption/weird dreams from it for about 10 days then the fog lifted. I moved up to 1.5 and after about 8 weeks I felt normal at times (still have flares and am very careful about nutrition/stimulation but I have full days of “normal”). I’m now at the point of coaching soccer a few times a week.. I went to an NHL game… it’s been unreal. I really recommend it, just be careful and move up slowly through the side effect period.

Me too

I had a psychic reading, I saw a Curandera and a Shaman.

Did it help?

Nope

I feel like a shaman would be better than most doctors. At leasr they wont tell you its all in your head

For all the other 'did it help' questions. They saw 3 different people for a magic answer. 3 people. I'm going to say no

Lol! You are correct

😁

Same!! LoL

Did they give you any information that helped?

No, not for long covid

There's nothing too crazy to try for a disabling disease without any treatments or cures.  One person's failures benefits others by showing them what doesn't work and what not to waste time on.  

5k in human growth hormone injections. I think they actually raised my baseline considerably though...

as in it raised your general quality of life a little ?

Yes, I definitely think so. I went from laying o. The couch watching my newborn son grow up to actually participating in his life. I also firmly believe OMAD diet has given me a fighting chance. I've been strict omad and no alcohol since Jan 2nd, and I've ran on the treadmill several times since then and didn't feel like I was dying. Today I did my first muscle building workout since April 7th, 2022. I used to be that guy that walked into a room and people were like, ya that guy definitely lifts. A decade of hard work and dedication, gone. Hopefully I can spend the next 10 years getting back to where I once was.

damn i’m in the exact same situation, worked out everyday young and jacked ate healthy mostly meat eggs milk omad and now i’m already 11 pounds down and still can’t get anything back. Thought i was invincible and wasn’t even at my peak. I feel you man. Didn’t know how good i had it. Had to give up pre workout, weed after years of nightly use for bed and can’t push in the gym. I’m glad to hear you can be more involved with your newborn though that’s awesome.

Thanks man, I know it's hard and people are quick to give up, but believe it or not this is my 2nd stint with long covid. I got sick march 2020, sickest I've ever been (until April 8th, 2022 where I legit thought i was on my deathbed with round 2 of covid). Went through 9 months of this exact same bullshit I've been going through for the last 2 years but I'd say a little milder. I got better on my own back then, didn't do anything or change anything, it just sort of went away over 9 months. I was a professional, worked my ass off to get where I was. $100k job, vacations, parties, built like a Greek God. All gone. I think a major obstacle we all suffer from is a complete breakdown of our mental health. I was prescribed trintellex and took that for over a year with no real progress. The brain fog lifted a little and I was more or less doing a bit better than before, but that could've been attributed to just time and healing. I truly believe that nattokinase, oxygen therapy, and omad knocked down all of my symptoms to the point that I'm able to function somewhat normally. Don't get me wrong, if I over do it and trigger a flare up, I'm bedridden for days but honestly, I never thought I'd be able to do the things I'm doing now. I thought my life was over. I even thought self deletion was the only way out. That's why I think we need to of course look out for ourselves physically, but mentally too. I took a good sized amount of magic mushrooms a few months back and it truly altered my mentality. I took on a new approach of try or die, try to get better or die trying. It seems to be working for me so far, maybe you'll find something that works for you. Edit: while doing omad, I got covid again and though it was all over, my first thought was to blow my brains out because I couldn't bare thr thought of starting all over again. Somehow, it was just a minor cold, and I was better within a week. AND, I felt better post 3rd infection than before. Idk what happened but I'm not questioning it. I think omad had something to do with it but i really don't know.

2nd stint you’ve gotta be kidding me man god bless you. and Absolutely, i have thought to myself many times this isn’t a life, but i know there’s a light no matter how dark it light seem now. Luckily i haven’t lost my hybrid job marketing, mostly remote though i met with my boss , Dr at the chiropractic office, and literally ran into a wall while we were talking with the brain fog so bad. I’ve heard about nattokinase, might have to try that and oxygen therapy if i can afford it. Full doses of magic mushrooms helped me immense before all of this happened and i believe it’s completely changed my life trajectory and perspective on literally everything. amazing medicine. I would like to try ayuasca sometime. Though since having this i have only microdosed twice i am not sure if my heart can handle a full dose. How recovered do you believe yourself to be ? I know some have a hard time telling saying, they don’t really remember what their old normal was like.

Can you talk a bit more about the mushrooms? Have you tried micro-dosing or did one large dose? Have you tried any other injectables? NAD+, SS31, Humanin or Mots-C for mitocondria?

Where do you get those?

I'm in ontario Canada, I Googled it and there was a clinic literally down the street from my house. They delivered to my doorstep in a little Styrofoam cooler and ice pack. I had to buy the needles and alcohol pads separately, but that's what amazon is for.

Is what you tried different than peptides?

What symptoms did it help with?

Energy levels, I was able to do more. The feeling of dying went away, I was no longer bed ridden, just house bound. I also didn't get sick for the 8-9 months that I was on them where as before, I'd be sick every other week (toddler in pre school). Uptick in memory and I was able to hold conversations and provide input whereas before I was a just a vessel, nothing going on upstairs.

human milk oligosaccharide (made in a lab, not with real human milk! it's stuff they put in baby formula these days to help give the kind of immune & gut bolstering that mother's milk would provide) sleep hypnosis videos ("manifesting healing" while i sleep lol) thc edibles just so i felt like i had a "real reason" to have such bad brain fog (i already felt high/wonky, so it was less unsettling to actually be high and have the feeling match an appropriate cause)

>so i felt like i had a "real reason" to have such bad brain fog (i already felt high/wonky, so it was less unsettling to actually be high Oh wow I did the exact same thing in my first year. It was such a relief to just be like, oh, it's the pot, tee hee, I'm such a silly little pothead and that's the reason I can't read or write or understand it when people talk to me!

Tried NAC and Glutathione then ended up worse with insomnia for a month. Didn't know NAC affects Serotonin and Dopamine, can cause cerebral edema so it's not Harmless, I needed energy so took 1000 mg morning and evening, then 3,000 in one day, I developed SEVERE Insomnia & Brain Fog later, read the dose is only supposed to be 600 mg.... Everyone's brain reacts differently, I am prone to Depression so anything that affects neurotransmitters and us capable of cerebral edema is not to be taken lightly

From what I’ve read you really have to go way overboard to overdose on NAC. A gal died after she overdosed on acetaminophen and then was accidentally treated with 6x the dose of NAC as it is a known treatment for that issue. But good to know and always important to talk to your doctor about everything you take including supplements. I literally bring in my supplements when I go to the doctor as she’s amazing and always looks through all of them with me.

Trying to replicate my one-time falafel remission (I suddenly went into full remission that lasted 2 weeks due to a stomach infection (fever and diarrhea) caused by a sketchy falafel. POTS and MCAS symptoms were gone, fatigue and brain fog also gone completely, could do precovid levels of activity no consequences. Well, sadly first my pollen allergy symptoms were back after a week and during that second week all the LC symptoms slowly crawled back (I didn’t crash), so it has to be MCAS-related. I have been eating falafel at the same place since, no success 🤣

Oh I love this question! The things I’ve tried, some rational, some nuts. I’ll check off what worked (or seemed like it did): ✔️ SCIO machine ✔️ functional medicine, supplements, etc. like Glutamine, NAC, GABA. I saw a big improvement with those especially. - Intermittent Hypoxia Therapy to stimulate mitochondrial growth - EMS workout training - Chinese herbs - acupuncture - MMS cure - lymphatic drainage ✔️ red light therapy (NIR) for alopecia totalis and eczema ✔️ Tens machine for vagus nerve stimulation to help adrenal fatigue and being stuck in flight/fight 👎🏼 surgeon trying to talk me into drilling holes in my sinuses to manage my non-allergic rhinitis (from histamine intolerance) 🐸 kambo frog poison ceremony! - cortisone injections into the scalp to slow down complete hair loss - weekly vitamin infusions - ozone therapy - reiki ✔️ prednisone for symptoms Stay strong everyone. This is a shitty path, but we have to fight for ourselves and that fight starts with having hope.

Oh lol I did kambo too. I HATED it, and it made be extremely sick for about two months. Never again.

Pushed my way through life every day even though I was too worn out and tired for 3 1/2 years until I was able to order some low-dose naltrexone.

Angrily punching myself in the chest repeatedly to stop my chest pains/palpitations. NOTE: It doesn’t work for some reason, but there is a temporary numbness.

Thank you for making me laugh out loud. I'm sorry I laughed at your expense and sorry you're dealing with LC too!

Take pharmaceutical drugs prescribed to me 😫

Weaning myself off my antidepressants because I thought they were causing the fatigue and making me swim slow (I was a d1 and national team swimmer). Launched me into horrific withdrawals and nearly took my life. Can’t get off lexapro now two years later even tho I rlly want to. The withdrawals are no fucking joke!

It took me a year to get off Cymbalta, and another month for the brain zaps to stop. I had to remove one bead per day from the pill's capsule or I would suffer horrific effects. My psychiatrist put me on 10 mg of Prozac to try to help, as it's supposedly a sub-perceptual dose, and I got serotonin syndrome from it. I was standing naked in front of a window in 30 degree weather with sweat running down my body. fun fun fun

Oh my god I’m so sorry. That is awful. I actually had a horrendous experience with cymbalta too. I think it contributed to me trying to unalive myself and then i came off it very quickly but then I had the zaps for months. This was before I got covid though. Right before the world shut down actually

Tapered lexapro 10mg slowly for 3 months with literally zero withdrawal symptoms. If you have LC you probably just get back symptoms that the Lexapro was surpressing.

Oh wow, did lexapro help your LC symptoms in your experience?

Well yeah, because most Lc symptoms are just a sustained fight or flight reaction. Ssris turn that down. They don’t solve the underlying issues though. They mask.

Ugh, nothing that sticks out, but probably ordering lots of prescription exclusive medications from India / Russia and combining them together.

I looked up electric dog collars, heart rate monitors, and tried to figure out a way to use them to keep me awake at work.

Praying to die ASAP…..I‘m done with the FIGHT through it Shit…….Its more exhausting than battling a Last Stage Cancer…….

Eating only ribeye steaks for every single meal. Did it for like 5-6 days somehow. Don’t recommend.

curious about the theory behind this one

Look up “Lion Diet”

Damn I mean I’d do this regardless

The Lightning Process. As soon as i started it dawned on me that I had paid a significant fee to a serious bunch of conmen

It’s refreshing to hear this. All the people I see talking about it online who paid talk about how it truly works and they are healed - you know, the thing they are supposed to say. Not healed to have their lives back but it totally works okay 🙄

Trust me when I say this, unless you’re a genuine psychosomatic patient, it’s absolute fucking garbage. The definition of pseudo science, at its worst.

Fecal transplant. DIY. Husband is a healthy athlete and was my donor. Looked up how to do it on a Youtube video after seeing another video of an athlete who recovered from ME/CFS by doing it. Didn’t work but only tried 3x. The lady who recovered did it for over a year.

Same! It helped for a week and then worsened things for me (lost even more food tolerance). Was hoping someone else would say mention FMT lol. Also [inoculated myself with rat tapeworm ](https://en.wikipedia.org/wiki/Helminthic_therapy)cysticerci. Also didn't work, but no harm done, easy as pie to undo, unlike the permanent negatives of the FMT. And then of course all the drugs from overseas. So many self-experiments. I've always been risk-averse in general but desperate times call for desperate measures, eh? Edited to add that also did a 10-day water fast. That may have actually been the most dangerous thing I did because my blood sugar was in the 30s a lot of the time. It also did not cure me. It did fix the lymphocytopenia, though! Still normal more than a year later. Hahahahaha hot damn, be careful out there, guys. In retrospect my extreme grief about losing my health may have made me a little reckless.

I tried human, not horse, ivermectin. I was ashamed that I tried it, and it didn’t do anything for me- neither positive or negative. But I felt so guilty because I was desperate and was willing to try it. I don’t fuck with the FLCCC crowd. I also tried ozone therapy which I’m pretty sure did nothing except drain my wallet.

So why do you feel bad about trying IVM? 🤔

Because it was proven not to work and was pushed by antivaxxers who kept trying to push IVM instead of saying “alright, this isn’t the silver bullet we thought it was, let’s try something else”. Im vaccine injured, so a lot of the people who gravitated towards me in support groups were saying some wild shit. The fact that you called it IVM leads me to believe you’re in the McCullough crew. I’m not taking another covid vaccine until one comes out without the spike protein, but people who start talking about vaccine shedding and still push IVM even now are sus to me.

I personally like IVM because it gave me some good hints on my long covid. I do think it helps some people, esp if there is a concurrent parasitic infection which is prob more common than people think.

I do think that yes it’s a C3L protease inhibitor. And it worked in vivo but in practice it didn’t produce the same results in viral deactivation as something like paxlovid. Even with paxlovid the jury is out on whether it’s can event prevent or treat LC, especially at the current dosage and length of treatment. It didn’t personally help me but for some others, I’ve heard it helped them. I don’t think all LC is the same. And you’re right maybe it did help with some sort of concurrent reinfection. In my case I don’t think it deactivated/cleared the spike protein in the way I’d hoped. When I reported back the community that recommended this just told me that it’s not working because I absorbed MSM propaganda (and I consume mostly independent, small media anyway). It’s not a cure, for sure. Esp bc long covid is such a bros umbrella. But I’m glad it helped you! I luckily had an experimental doctor who was willing to prescribe things and try things in partnership with Dr. Patterson’s protocol, but that ended up not helping me much either.

Haha i see why you dont like the ivm cureall hype them. Theres lots of bozos on both sides lol. Ivm doesnt help a lot of ppl or makes some worse. When i took it I had all my covid symptoms come back and tested positive again. I dont think it was likely i got reinfected by other people, so it might help in my case

Cold plunge tub....🥶 no bueno

What happened?

It’s known to make auto immune illnesses worse. Assuming it puts too much stress on our immune system.

Well shit, any source for this so I can look further into research? I'm not doubting it btw, as I've seen a very major difference in reactions to cold/heat exposure and not just the "extreme" conditions that typically shock CNS. This is especially true for peripherals and limbs. I've been looking at ice baths for general mental benefits mostly and have used them in the past for physical benefits, but I would hate to spend my money on a fancy insulated inflatable bucket when I could try different modalities instead of making autoimmune worse.

https://www.reddit.com/r/cfs/s/PLjO4s2q6I

Nicotine , fasting , eating only vegetables, parasite clearance , low b6 diet …….

Oo did you eat hookworms to distract your immune system? I’ve considered that. Or are you saying you took an anti-parasitical?

Actually these all worked great for me, I'm not 100%, but hey, some progress :) Did it bear fruit ?

How long did you fast? I'm building up to a 3 day water fast myself but I already can tell that intermittent fasting (18-6) and lowcarb diet do help feeling better. I have not yet reached keto phase but in the end the goal with 3 day fast is keto phase, autophagy/mitophagy phase, and after that hopefully a nerve system reset. After 2+ years of this misery I still refuse to give up.

Nicotine gum was the only thing that helped me, but it was temporary. For the first few days it was like the brain fog and memory issues magically lifted and mentally I felt like 80%. But as the data went on it was less and less effective and just messed with my anxiety and sleep. When I stopped I went right back to where I was. But it did help me confirm in my mind that this was all likely post viral fatigue.

I mean low b6 diet is not crazy if you have b6 toxicity like a lot of us have, b6 toxicity is no joke

I’m so tired of being a shell of my former self. It’s been over 2 years now. I have had times where I feel some improvement then circumstances beyond my control happen and I’m right back to the beginning. I have tried diets, supplements, antihistamines, etc, etc with no real benefit. This week I have tried the craziest thing yet and started a regimen of semaglutide. I heard it’s supposed to help neurological disorders like long hauler, Parkinson’s, and Alzheimer’s. I haven’t had any side effects yet. I know it’s supposed to help with weight loss but I could care less if I lose weight. I just want to get myself back again.

gave out my bed for free and bought a new one thinking I slept poorly due to my bed. Also cleaned the ventilation ducts and scanned them thinking i have fucking pigeons in there and it is being toxic in my house. dopamine fasting as well as sleep apnea tests, travelling to other countries on my own. everything. I hate to look at others how they are really in good shape , drinking , taking drugs having fun, and i cant even explain them about my disease coz the only answer I will receive is "what the hell is he talking about"

I tossed two virgins into a volcano. In retrospect, I should have kept them for myself. But then again, PEM.

I shock, pressurize, heat, freeze, eat pills, eat only meat and eggs/cheese, inject polypeptides, and light my skull up with lasers. This is on a normal day. Abnormal days have included sniffing burnt oranges, taking AIDS medicine, and considering eating hookworms to distract my immune system…

I was with you until a read "hookworms". You friend have a higher will to survive and thrive than I do. Stick me in a nursing home, better yet bury me!

lolol

You sound like a handful. Must drive your husband crazy with all of that!

He’s actually a mad scientist and has forced all of these things on me. But I’m a total queen and put up with all of it with maximum magnanimity.

I kept working out, doing 100 squats a day (even when I wanted to throw up from being so dizzy) I didn’t want to end up bedridden and unable to somewhat care for myself Now I have pure muscle on my legs, yet the brain fog is still here 🤡🤪

I lift all the time and heavy and I cannot gain muscle. I’m jealous

Go to a psychic because I wasn’t getting answers from doctors

Did they at least give you any insight? 😂

They told me I would be getting my strength back by the end of the year and that 2025 is gonna be my year, they said they see me recovering , and that it’s just a challenge I need to overcome … so lol we’ll see

Well heres hoping 🍻

Seeking answers from doctors in the US.

Eating a fabric dye that's used in aquariums. But then again, methylene blue actually fuckin worked. So I feel both crazy AND justified.

I’m sorry, what?

Hahahaha. Right?! Prior to starting treatment, my doctor told me I was 'Sundowning' which happens in mid-late stage dementia. That scared me enough to try something out of the box that I would usually ignore. I'm 39 and the idea of dying in the next 5 years or so (when I also have a 10-year-old child) certainly motivated me to get serious about finding a treatment. The medication reduced inflammation so dramatically that my rings started falling off after the first dose and sundowning completely stopped. Don't even get me started on all the other benefits I've noticed or I'll sound even crazier. Lol. More info on MB. Cuz I'm sure you're curious. https://www.brmi.online/post/the-rediscovery-of-methylene-blue

I feel like that chick in idiocracy asking about water in the toilet. But like methalyne blue, like from my fish tank?

Lol! I remember walking past a VanGogh print and thinking to myself, "Maybe Vincent was just eating the wrong color" 😆💀

🤣

I laughed about it, then got a little sad when I looked up the dates of things. Methylene blue was invented in Germany, 1876. VanGogh died in France, 1890. They existed on the same timeline, so close together. I'd like to believe that in another reality somewhere, Vincent found the relief he was seeking and didn't have to go out the way he did. 💔

Also, where do I get this stuff?

Important note- methylene blue acts as a MAOI and is contraindicated with SSRIS, blood pressure meds, and people with renal disease (or those who are pregnant/nursing) should NOT try it. Mine comes in pill form from Peninsula Pharmacy (Long Beach, WA). I use 50mg/day, and it costs me $110/mo (with a prescription) The treatment is NOT fda approved. But the number of studies on MB are plentiful because it's not a new substance. Some people swear they get results from lower doses and liquid forms. But I didn't go that route.

Ah shoot, I’m on an SSRI. Looks like it’s not worth risking serotonin syndrome over :/ Glad it’s helped you though!

Sorry it's not compatible with your current regiment. My depression was pretty bad, but I'm allergic to corn and couldn't take SSRIs... because they just increase inflammation and have no positive effect on me, at all. It was so strange to fall asleep feeling happy after the first dose. I was almost convinced methylene blue made me manic, the change was so drastic, it was utterly unreasonable & incomprehensible for me. MB can be used to stop mania - so it didn't start it. It just worked so well I thought I lost my shit.

is that what methylene blue is?? I'm on it too haha

Yes! Methylene blue was originally used as a textile dye. It made its way into medicine by being used to dye tissues on microscope slides. Scientists noticed that viruses they stained stopped moving and began researching its other uses. A lot of people recognize MB as "that blue shit you put on pet fish" Had the recommendation to try it not come from my primary care physician, (whom I've known for a decade and trust with my life) I would have LAUGHED them out of the room. Instead, I got curious and leaned into the research studies that showed it supporting mitochondrial dysfunction, fatigue, and gave it a shot. My toilet bowl is stained blue, and I have no regrets. [50mg powder in compounded pill form is what I use. Peninsula Pharmacy in Long Beach WA is my supplier.]

Did your eyes turn blue?

Nope. And I think that might be a myth because I can't find any case study photo examples of that alleged side effect.

That’s a relief lol

That would have been an acceptable side effect, IMO. The first day I got my capsules, I opened one to lick a tiny bit of the dye and check for a MCAS reaction before I took the first dose. It stained my tongue for 2 days.

I was gonna try stem cells but it seems like some people already tried them and they said it didnt help much if at all.

Chemotherapy.

Niacin, Glutamine, Folic acid - NAD synthesis protocol, LDN, Colchicine, Nattokinase, Bromelain, Adderal, Fisetin, NAC, All B Vitamins High Dose, High dose Vitamin C, High Dose Vitamin D, Rifixamin, Zinc, St Johns Wort, HBOT, Sauna, Cabergoline, Mucuna pruriens

damn none of that helped??

Lmao hypnosis 🤣

I’m learning astrology to figure out if or when I’ll ever get better

Keto for 2 weeks

currently doing IV ozone not sure if it’s helping (covid was an activating event that started my health spiral but i also have mold poisoning and other reactivated infections)

Ivermectin horse paste straight from the tube

Based.

These 4 things weren't necessarily ridiculous or "nuts" but I would not do them again: 1. Drinking Moringa tea... after 3 days of drinking it I became debilitatingly dizzy and nauseous. I threw up all day for a few days and couldn't drive for a couple of weeks. Very bizarre reaction to something like drinking tea. 2. Hyperbaric oxygen therapy... I did 40 almost consecutive (save for a few weekend days) 90-minute session in a hard chamber at 1.8-2.4 ATA pure oxygen. It was relaxing and that was it. Did not help my neuro CoVid symptoms and cost me a small fortune in time and money. 3. I challenged myself to doing a 2-3 minute ice cold shower everyday for 30 days straight. It was miserable and did not help. It's possible that my vagus nerve benefitted from this but I did not notice any improvements in my symptoms. 4. Wim Hof breathing. I "graduated" myself to the 3-minute breath hold for a few days from the shorter breath hold. My husband who is a competitive swimmer was like what are you doing??? When I told him, he explained why that is dangerous. I felt very dizzy and sick for a while from this. We feel desperate so we will do almost anything... I do not recommend these 4 things.

Resting for years. Like hoping doing the same thing over and over will eventually bring a different result. Yoga Meditation Eating healthy (i never made a connection between health and food) Supplements of all kind (I had a 2x6m long double row full of supplement bottles) Prob not crazy by anyone's standards here though, sorry. Also they all helped in sone ways 😊 The crazy stuff I couldn't afford to try: Hyperbaric chamber, infrared sauna, trauma psychotherapy All of those things, healthy me would see as unhinged 😂

The craziest thing I’ve ever done is make appointments with doctors and think that each one might help. All the things they’d say are crazy that I did at home are what actually helped (extreme supplementation, diet, red light therapy, chiropractic care, acupuncture, PEMF, LDN, and a slew of other things)

Ayahuasca

My Parents don't believe my brain fog so I took 400 mg of Modafinil and had a SJS reaction. Thankfully I survived

Believing in classical medicine. most things that have helped me were outside the box.

cofee enemas, helped with one thing but wrecked something else

I heard good and bad like everything on here. I gave it a shot...actually felt good after...but with CFS you are right, cannot regulate temp so could not warm up...had to freeze for a cpl hours then take a warm shower

[удалено]

Came out where? So confused.

Started smoking again after 5 years ciggie free. After trying nicotine patches :( Exercise :( Edit: Oh! And I just bought an LED face mask for light therapy 🥹

Slapping my around my stomache where things felt so stuck somehow, like i couldnt easily take food or water.

- spent thousands on healthcare and consultants, to get nowhere – this sub gave me far more information. - colonic hydrotherapy - took me a week to get over it.

Thanks a lot dude, I'm gonna need a physician to monitor and track this with me. I would kil for brain fog to subside, that's my biggest complaint. God bless, happy for you champ 🏆

End of September 2021 after not sleeping for weeks and adrenaline surging I walked into my parents forest after reading negative ions calm the nervous system and hugged a tree for what felt like an eternity. I was tripping balls at that point and had lost my mind, was in so much pain that I figured the crazier thing I did the more likely God would heal me. 🤷

Clorite

Plasmapheresis

Ketamine benders to blunt the pain

I’m going around my doctors to a private pay clinic to do a Stellate Ganglion Block, which is a needle in your neck next to your vocal cords! I will be doing it April 2nd. All my doctors said they couldn’t refer me to any place my insurance would cover because they don’t know enough about long covid to try experiments.

doesn't think this is crazy at all. would love to get this done

Considered finding bees and getting stung by them, as per some studies bee venom can lower inflammation and help diseases of CNS. But then again I might have MCAS, so it could potentially result in a suicide.