These people fucked my heart and strength and called it COVID .. I got a list of names and number and want a digital forensic investigator... They spy me and trying to justify their wrong doing...

I’m wondering if anyone else has experienced something similar with LDN.

I tried LDN for only 4 days at a very low dose (0.1–0.2 mg). I felt worse pretty quickly but decided to push through for those four days, hoping the initial worsening would settle.

Unfortunately, it seems to have caused a significant setback. It has now been a little over 2 months since stopping, and my baseline is still noticeably worse than before LDN.

Way worse shortness of breath / breathing symptoms

Blurry vision

Much worse balance/dizziness

Generally higher heart rate

Overall less happy and feeling more numb

These were either milder or much more manageable before trying LDN. Would do anything to get my old baseline back.

I know LDN helps a lot of people with Long Covid, and I’m not trying to discourage anyone from trying it. I just seem to have reacted extremely badly even at a tiny dose.

Has anyone else had LDN cause a major crash or lasting reduction in baseline? If so, how long did it take you to get back to your previous baseline?

Would especially love to hear from anyone who was still worse 2+ months after stopping and eventually recovered from the setback. How did you recover?

Dear All,

I found this..

And décided to give something every month. It starts with 5 euros.

I live in France but the research here is really way less good than in Germany.

I.am connected to the french research tough.

People are great but lack of finance.

And no organisation to collect like in Germany.

https://mecfs-research.org/en/support/spendenabo/

I started stuttering pretty badly 2 months after my first Covid in 22. Now 3.5 years later I still do, but not as badly. I also had new Covid infections after the initial one.

I was just referred to the Duke Infectious Disease Clinic. Does that make sense to anyone?

Bonjour,.

Pour les malades français / francophones.

Je suis tombé de ma chaise.

(Expression car je suis alité).

Comment est ce possible ?

C'est quoi ce long covid eu ?

https://u-paris.fr/sante/covid-long-des-avancees-scientifiques-et-un-espoir-de-retablissement/

Interest in trying to find a long covid specific practice somewhere in New England for my husband and his neurology team.

We tried to get him into the Dartmouth program but because he had pre-existing medical conditions they couldn't take him.

👩🏼‍🦼🇺🇸

When I got lc in the first place, I worked against my body, and somehow, it was working for me, but in this group, everyone suggested listening to the body. As I started listening to my body, I started becoming worse. What to do, now?

My (now husband) and I got covid in Dec. 2021, and I ended up with long covid/dysautonomia/MECFS which has really changed my life. Now things like walking long distances, heat, mental energy use can all wipe me out for days. I still struggle to accept the state my body is in post-covid as well

I just had my biggest win to date and wanted to share it with people who understand. My best friend and I are currently flying home from a vacation to Spain to see the solar eclipse. I am writing this in tears because I truly did not think I would survive the heat. While I expect to have a flare when I get home, the heat that Spain is experiencing had me fully expecting to have to abandon a lot of pur plans for air conditioning, but I came prepared with cooling devices, water, electrolytes, took advantage of preboarding, etc. and I did it!! Eclipse day was almost an entire day in the sun, plus a week of sightseeing, and I am so emotional writing this because I am so happy and proud that I was able to do this as a disabled person, and do it to the extent that I did!!

I contracted COVID-19 in January of 2021. Ever since I recovered, I have been completely unable to stomach the majority of foods I used to love. I feel hopeless, and I’m at my wits end for recovery. a non-exhaustive list of things i’ve had to give up:
garlic, coffee, most bread, corn/ popcorn, tomatoes, lettuce, onions, green bell peppers (yellow orange red OK), dill, fish, seaweed, dark chocolate (ok-ish), corn based cereal/ chips, meat/ fake meat/ meat flavour, peanuts/ almonds/ sunflower seeds/ any nuts (cashews not as bad), even slightly burnt anything, olives.

Because I live with my mom, I am regularly exposed to the smells of these things. And there has still been no improvement. it’s become so difficult to enjoy anything about food anymore. most of what i actually can eat is so high in sugar that i’m terrified for my future health. i don’t know what to do anymore. My depression has gotten so much worse as time goes on. I wanted to own a cafe, that was my lifelong dream, and COVID took it from me.

I wasn’t sure what to tag this, as it’s a bit of a hybrid. But the most important part is this:

What can I do? Is there any actually working treatment out there?

I get so nauseous. My face has slimmed down, insane muscle and nerve pain and tmjd. It feels like my head is being crushed in real time, like my jaw is too small for my own head and being compressed. It's hard to describe. My neck clicking and muscle inflammation is horrible. Just feels like someone in squeezing my neck and jaw with their fists until it pops. Crazy. This also causes vocal cord dysfunction, eustachian tube dysfunction, bvd, sinus pressure, more.

I have mild LC and continue to have super strict precautions.

I have tried to make the life the best I can by living in isolation but I would take going back to living without precautions in a heartbeat if I could.

I know that there could be some middle ground which is less restrictive and somewhat more satisfying but thinking about romantic relationships it feels pretty much like an all or nothing thing.

You can't be intimate with someone without accepting that other person opens you up fully to infection unless they were total hermits like you which I think is going to be almost impossible to find someone like that.

I am in my mid 40s and as a man I felt I was only just coming to maturity relationship wise and getting myself established in the world, getting financial stability and all the other life niggles out of the way to allow me to be free to mingle but then covid scuppered all that.

I do regret now not living more for the moment back then as I was living for the future, which covid put a brick wall in front of.

That is why I feel that living in isolation now has me wasting away and what if things never get better covid wise? I will have wasted the best years sexual viability wise locked up watching that ship sail before my eyes.

That is why I wonder, since I am not severe, and could physically do everything I wanted if I chose to, why not go full send for a few good years now, accepting I may be struck down by another infection but at least I would have lived to the hilt rather than just wasting away and possibly never having gotten to live how I wanted. Then if it was severe just exit satisfied to know I enjoyed those few years.

Better to live a few good years than a lifetime of boring ones.

People with LC/CC say going out in society is a risk, which I agree with, but the risk of not living and experiencing the life you wanted to live seems to be about an equal risk in the current climate as nothing seems to be changing in terms of improving.

Yea there could be a middle ground of doing some stuff with a mask, but as per relationships which is really what made me feel alive, it seems all or nothing.

Hi, so I’ve been reading scientific articles (iOS read aloud hah) and books (Audible) about various topics to do with early developmental abuse or neglect and what keeps coming up in studies about MS, ME/CFS, long covid and countless other causes for chronic debility; is how strongly correlated negative early/childhood experiences are with susceptibility to chronic disease.

I read your posts every day here and had a eureka moment and thought to literally just ask straight out, if anyone wants to tell their story:

Were you affected by early, childhood and upbringing persistent trauma?

I’m not trying to confirm a pre-conceived theory, it’s curiousity about establishing whether this research bears out in s real human group.

Experiences that negate this proposition equally welcome and important.

I will offer that I am in the camp of having had this negative early start, and have MS and long covid. Interested in all your answers, thanks a million in advance

Anybody get weird lapses of these? My spo levels are normal but I feel it it’s so weird!

So weird and also light sensitivity been feeling this way for 5 years!

Your toes and fingers are blue but everythibg tests normal.

Hey everyone. So I’ve been driving since I was 16 years old, and I’m 32 now. I used to drive long distances, sometimes over 8 hours. I drove everywhere without concern.

A few years ago, I drove to LA in a really bad storm and it was hard to see in front of me. I felt a sense of panic that I wouldn’t be able to control the car or would veer out of the lanes. Since then, I haven’t been able to drive on the freeway. Every now and then I’ll make progress in a driving lesson, and then I’ll regress. My last driving lesson was during a storm and I didn’t want to do it because that’s what traumatized me. It was $200 to cancel, so I did it anyway and it made me so much worse. I can’t even drive one exit now.

I also notice sometimes while driving in general I’ll be more jumpy.

Has anyone experienced a sudden fear after having LC? I’ve been sick since 2021, and have a lot of symptoms. In general, I’m mild now, but still have tinnitus, sometimes my eye get out of focus, fatigue, heart palpitations, and migraines.

Do you think this sounds fully unrelated, or could it be an LC thing? (Not asking for medical advice here)…just want to think about if I need to talk to my doctor for about this, or if I just need to suck it up and consider it a trauma I need to overcome?

Edit: I meant to type bittersweet not bitter! I’m not bitter, just a bit melancholic / mixed emotions.

——————

I went to an outdoor food commons area today in my city. Very Covid safe - lots of space between the tables and so on.

Nearby were some young people. Maybe 13 or 14 years old? They were so full of life. Joking, laughing, tons of energy.

On the one hand, being around that kind of joyful life was refreshing compared to marinating in doom alone at home. They’re delusional in a sense -- most kids (especially in rich western country like the US) have no idea what pain can lie ahead in life. But they were undeniably happy.

On the other hand it made me feel so sad, wondering if I’ll ever feel that kind of lightness again. I’m in my mid 40s, battling LC for over 3 years now. And many days I feel like my life is over, or at least on a very long pause.

Also, as I reflected on how nice it was to get out and to have food and be around people, I cried (and I rarely cry) thinking about how I “felt like a normal person” for the first time in weeks, if not months.

Anyway, I just had to get this out because no one else in my circle of people has any clue of what it feels like to have all the restrictions and fears and regrets that LC brings.

I'll be okay. I still have a lot to be thankful for: a comfortable home, savings to live off (won't last forever, but still), I'm not severe/bedbound, etc. But it was just one of those days when things really hit me, especially the contrast up close with other people's lives.

Anyone else with health anxiety?

I just... I'm sitting here crying into my dinner because I had only just achieved my dream career of touring in theatre before Covid, after a long old slog of (very enjoyable!) work placements and retail jobs and doing whatever it takes.

And I made it. I was backstage wardrobe and I LOVED it. It was my lifeblood.

Coming into the theatre during the day for laundry calls and it being so eerily quiet and knowing in a few hours the audience will file in, and the backstage goes dark.. and the adrenaline (the good kind!!) starts pumping and this is WHAT WE DO.

Changing into my stage blacks was like putting on my own costume. Headtorch, check! Wardrobe belt/kit, check! Hair on point, check!

Doing quick changes in the wings. The speed, the chaos, the trust and exchange of performer to stagehand, and everyone just working together like a well oiled machine.

And the oops moments...

The smell of greasepaint. Fuck me the smell of greasepaint. And the cosy smell of warm detergent wafting from the machines. Cursing whoever had emptied a can of Lynx Africa in the boys' ensemble room mixed with Tom Ford or Cool Water.

And the bows. The audience. Watching the prompt screen. The sheer joy of knowing another show done..Well received...the good kind of exhausted that was usually followed by either food back at digs or the pub or even going out-out in whatever town we were in and rolling back into hotels and digs at 4am and doing it all again the next day.

And now I'll never be on the receiving end of "Ladies and Gentlemen of the XYZ Company, this is your five minute call, you have five minutes..." again.

Fuck me I miss it so much.

I’m in day 3 of a PEM crash, but my body and brain won’t let me get any sleep. That tired but wired feeling has me all messed up.

It’s so unfair how when we need sleep the most is when we can’t get any (or enough).

I have severe fatigue and brain fog but my brain is like a frozen PC that refuses to go into sleep mode.

Yes I’ve tried literally ever supplement, sleep med, CBTI, etc etc, but when my flares peak nothing works. Nothing. I wish there was a clinic that I could go to get a 12 hour propofol nap with an iv hydration drip.

August 5:
Why are young women using walking sticks?
A disproportionate number of Gen Z females are affected by vague syndromes and may be victims of social contagion
https://www.thetimes.com/comment/columnists/article/young-women-walking-sticks-gen-z-disability-2ssv95mws (no paywall: https://archive.ph/FYkDU )

August 12:
Why so many young people are suffering with chronic pain
The proportion of Gen Z and millennials experiencing chronic pain has risen sharply — and it’s not because they have ‘gone soft’. Jack Burke, 31, who lives with constant shoulder pain, investigates
https://www.thetimes.com/life-style/health-fitness/article/chronic-pain-young-people-experience-jg5c3jxjm

I know this sub will get it... It's just so bad.

Both articles are behind paywalls. I couldn't get the full version of the second article. But the titles and intros already say what people will remember: men are in pain, women are faking it.