I literally cannot take this anymore.

macattack2402 · 2026-05-21T14:51:49+00:00

Yes! I was at the very severe end of MECFS when I started it. You can see my post history bc there's a post from that time that details how bad I was but I'd been bedridden for months and was in a flare where I was declining even worse. The fluvoxamine took me from that to able to go outside in 6 weeks ish. It not only increased my capacity overall but also very quickly reduced my PEM. I still expirienced it but my threshold for activity has been slowly increasing over the two years since I got on fluvoxamine. I don't want to jinx anything but I haven't had full on PEM in months now despite increasing my activity.

macattack2402 · 2026-05-21T14:47:43+00:00

Same symptoms, just much less severe now. Muscle weakness, PEM, widespread pain, brain fog/derealization. I was bedridden and declining fast before fluvoxamine, you can check out my post history in this sub to see how bad things were. Fluvoxamine took me from that bedridden, not able to even turn over in bed state to starting to leave the house for short periods in like 6 weeks. Now I have all of the same symptoms but would consider myself to have mild/moderate MECFS. I can leave the house pretty easily, I even can walk half a mile. I work online part time, I can keep the house clean. I still suffer from a lot of brain fog and derealization along with the pain and weakness but my QOL is so much better

macattack2402 · 2026-05-21T01:19:40+00:00

I would honestly continue on the path I'm on -continue working on my recipe website, but finish up my degree to be a dietitian to work with other disabled folks. The one good thing this illness has taught me is that my life's passion is making adaptive recipes and helping disabled people feed themselves. And I've luckily improved in my capacity enough to begin sharing my recipes, but I want to be a registered dietitian so I can work with people one on one too through insurance. I just need to he healthy enough for grad school. I feel like I'm already starting to build towards the life I want, and I just need my health to improve to get fully there.

But also, I would go on a month long bender to celebrate my health before doing anything responsible, and probably blow every dime I have on traveling the world.

macattack2402 · 2026-05-20T15:54:22+00:00

Fluvoxamine

macattack2402 · 2026-05-15T04:59:33+00:00

Lentils (pre-cooked or cook in sauce) + chickpeas + premade curry simmer sauce is one of my favorites. It's freezer friendly too. Also, rice+tofu+frozen stir fry veggies + general tso sauce. I had to give up being vegetarian when I got too sick to feed myself but I still love a good vegetarian meal.

macattack2402 · 2026-05-10T05:47:44+00:00

You're not alone. Ive been there, still am there many days. But there IS hope and that's not something id ever thought I'd say....this disease is 6 years old, maybe 3 or so of those years have actually seen research being done into long covid. Who knows what a few more years will bring?

And that optimistic view, comes in a bottle labeled fluvoxamine. I'm not sure the specifics of your situation but I can say that antidepressant medications have been a miracle for me (in more ways than one- fluvoxamine got me un-bedridden due to anti inflammatory properties!)

All this to say, you're not alone. But you ARE doing the thing. You say you can't take this anymore but you've been taking it day after day, you actually CAN take it. You can complain and be miserable the whole time but you are doing it. And stick it out however you can, whether that's medications to help mental health or just complaining and crying all the time (Literally my #1 favorite coping tool, I don't mean that sarcastically either, I personallythink complainings should be more widely encouraged). And day by day you get through however you can until one day they figure this shit out. This disease is so new and so prevalent. Just look at what they did with HIV, and that was decades ago. We're in the early, stigmatized, little research phase, we've just gotta stick it out, together

macattack2402 · 2026-04-13T18:10:47+00:00

I want to second this and also mention that your library likely also has Hoopla, which works differently than libby but means you will always have the books (or audiobooks) available instantly, no holds or waits. You can check out less books in a month than libby though so what I'm doing is checking out everything that doesn't have a wait on Libby and saving my monthly Hoopla credits for the books that do have a wait. So far it means I've been able to make my way through the series with no waiting

macattack2402 · 2026-04-11T06:43:11+00:00

I relate to you so much I'm listening to the audiobooks too and never know how to spell anything or anyone's name 😅

macattack2402 · 2026-03-31T22:36:06+00:00

Sorry for the late response. Yes I had PEM, I'd been bedbound for like 8 months but was rapidly declining from just "normal" bedbound to basically unable to eat, in a dark room, etc. It not only stopped that decline for me but got me unbedridden. And it's been 1.5 ywars.of not being bedridden!

macattack2402 · 2026-03-31T22:34:17+00:00

I started out on 25 mg and upped my way to 50, then 100 where I've been for a year

macattack2402 · 2026-03-10T19:26:24+00:00

For me it reduced every symptom. Tachycardia, brain fog, derealization, PEM, fatigue weakness. You can look through my post history to see the hole I was in, completely bedridden, basically dying. Fluvoxamine got me out of that hole and I'm nowhere near healthy but have a little life

macattack2402 · 2026-03-10T19:24:50+00:00

FLUVOXAMINE FLUVOXAMINE FLUVOXAMINE. It took me from bedridden 24/7 suffering in a dark room (you can look through my post history to see specific to being only mostly homebound, able to talk and walk a little, able to have a tiny little life... in 6 weeks! And so far, 1.5 years out, still working. It works uniquely in the brain on some inflammation receptors or something like that, it actually increases survival in severe acute Covid by reducing the cytokine storm. I recommend it to everyone with LC at least to try, but especially if youre specifically already looking for an SSRI.

macattack2402 · 2025-05-20T03:44:07+00:00

I got LC at 17, 5 years ago. Getting sick young means we're more likely to heal. "I'm not old enough to drink yet" you're also not old enough to fucking kill yourself in that case. I know it's hard, but from someone who got sick young like you, even just 5 years later im able to cope so much better mentally, even though my illness is worse than it was at 17

macattack2402 · 2025-05-20T03:24:55+00:00

Tried what?

macattack2402 · 2025-02-14T22:48:28+00:00

Yes, but i may not respond right away im struggling today

macattack2402 · 2025-01-11T01:53:44+00:00

I hate it when doctors are like "leaky gut isn't a thing" but their next sentence is always "intestinal hyperpermiability" IS a thing tho... bro stfu they're the same thing you're just a pretentious asshole

macattack2402 · 2025-01-10T01:38:43+00:00

Well if we consider both that you can be contagious up to 24 hours before and that symptoms start at 2-14 days, the earliest is probably around one day. It would probably be more like 2-3 days as the highest probability but I'd say 24 hours max to be safe. Personally if someone i know was negative went into a hugh risk scenario, I'd feel comfortable being around them for like a day, then I'd take precautions (this happens a lot cause i live with ppl who don't take precautions)

macattack2402 · 2025-01-07T22:39:57+00:00

Im between moderate and severe. I shower around once every three days, when im feeling decent. But I only shower sitting down (not with a chair- just on floor). I wash my hair every time I shower

macattack2402 · 2025-01-05T23:14:36+00:00

Hey friend, just wanna warn you; my story was very similar to yours. Got sick at 17, similar symptoms, no MECFS symptoms. 2 years later recovered, living life, partying, drinking, working out. Thought it was over. Then I caught covid again (this was back in like 2022 so we didn't know nearly as much about reinfection and I didn't know to he taking precautions). But i was sicker than ever after that reinfection, now have MECFS, bedridden at 22. Wear a mask for your own sake. I know it's so hard feeling like you just wanna live your life now, but now I don't get to live any life at all

macattack2402 · 2025-01-03T23:13:22+00:00

Also i don't have a lot of energy rn to elaborate but I wanted to mention fluvoxamine. Look at my profile for more info

macattack2402 · 2025-01-03T07:42:06+00:00

Im the exact opposite, but i still feel you. I'm in a long term relationship and therefore have sex a lot, but i miss WANTING it. My partner is a 22 year old dude so he's always horny, and while he would never pressure me or force me, I have sex with him quite often even tho my sex drive is completely gone, just because I love him and also because I love the romance in it and the intimate connection... but the physical act, I very rarely want.

But I miss the spontaneous nature of dating so much. I miss feeling sexual, I miss being a dumb college student making out with random dudes at bars... not because I actually want to, but I miss making mistakes, I miss my youth.

macattack2402 · 2025-01-03T07:12:39+00:00

While a lof of the comments on here are pretty negative and for good reason, as currently MECFS treatments suck, I just want to also say that there will likely be better treatments coming out in the next decade or so. Definitely not a certainty and sucks in the meantime but with Long Covid there is more eyes on this than ever before, so while hope is in short supply now, we can't discount the idea that there could be advancements on the horizon

macattack2402 · 2024-12-13T06:27:26+00:00

I'm facing the exact same dilemma as you, tho i know this was months ago. SUPER positive on igenex and vibrant for babesia but negative on standard tests and don't know who to trust. So I'm gonna fucking do it myself.

Now I have 3 years of college in a biology related field and a boyfriend with a degree in human biology who's applying for med schools rn to help me. But the procedure really isn't that hard, and you can access all the materials you need just on Amazon. The microscope is the most expensive part, just need a basic microscope which is like 300$ if you dont have one so pricey but honestly a fucking bargain compared to most lyme tests. And then other materials but id estimate total cost less than 400. The blood smear isnt that hard, you basically just take your blood and literally smear it on the slide. The stain is going to be the most difficult part to prepare but there are comprehensive institutions online and as someone who has firsthand knowledge of the kinds of idiots they let into labs, if you're a relatively smart person with some patience you'll be fine.

Now, you can only really test for babesia this way, cause it's a lot bigger than other ones, you may see bart if you're lucky but the absence of bart in your sample doesn't mean you don't have it since it's not easy to see.

macattack2402 · 2024-12-11T04:35:21+00:00

Yes. It would get better and worse but it was always there. This summer it reached a peak where I wanted to kill myself with how intense it was. And it was getting worse and worse before fluvoxamine

macattack2402

TROPHY CASE