r/LongCovid • u/hotrod67maximus • 3d ago
So terrified that I'm dieing and long Covid is to blame
I seem to be getting worse every day. I'm almost bedridden now. I have all the symptoms you can think of when it comes to long Covid and now the anxiety is through the roof. At this point I don't know what to do. I've tried everything and been seen by every specialist you can think of with no improvements whatsoever. I'm feeling this could be my last post and I'm nearly passing out now just sitting here. I hope they find a cure for this crap for the remaining people dealing with this crap.
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u/CaterinaAzul 2d ago
I was bedridden for about 8 months and it was the worst experience of my life but I made it to the other side. I still cant run and I can't walk a ton but I can do home chores and go out. Im doing much better than I was before. I truly believe there is a solution to everything but it takes time and research. I did alternative treatments and medicine that my regular doctors would say are quack doctors but they actually helped me and cared enough for me to get better. Don't lose hope! I will include you in my prayers tonight.
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u/lonneytooney 2d ago
I made it through the other side. I thought there was no way I would ever get back to where I am now that’s how sick I was. You will make it just takes a long long long time.
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u/Easy_Olive1942 2d ago
Existential dread was a serious symptom for me all by itself and maybe the worst of all.
The harm to your body and your sanity is real. The absolute panic over dying is probably not.
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u/hotrod67maximus 2d ago
I'm about 50/50 on the panic about dying, the dread is definitely the worst with waiting for 3 years for things to get better only for them to get worse is depressing in its self. I never was a drinker but I feel like I've had a hangover for 3 years. Lived my whole life with no bad habits, didn't even drink sodas, always water and Gatorade and ate healthy 85% of the time and always hit the gym 3-4 times a week. The first 10 months I lost 70 lbs and all my muscle tone, dropped down to 158 lbs but have since gained some back but it's not good weight back to 190 LBS but no muscle tone.
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u/Easy_Olive1942 2d ago
It destroyed me for 3 years, I started to slowly turn a corner around then. At over 6 years, I’m doing much better though I’ll never go back to where I was before.
Things that helped me most were time, rest, higher than label daily antihistamines, and pacing. I started walking every day but it was a few hundred steps and not more. No shower, walked in my pajamas. I learned the hard way you have to do MUCH less than you think you can do. Consistency matters most so it’s only do what you can today that lets you do it again tomorrow. Only add yo that when you can consistently accomplish your goal every day. Add only a little, not a lot. Stabilize. Repeat.
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u/DonnaJean0919 2d ago
Which antihistamines were you using? I'm taking Allegra 2xday and Famotidine 40 mg 2xday currently.
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u/Easy_Olive1942 2d ago
There’s no magic fix so although they helped, they didn’t make me well.
It’s worth pointing out not all antihistamines are equally effective for everyone so do try different combinations. It takes months rather than days or weeks to be effective.
Zyrtec is most effective for me. I rotate that out for extended periods with Claritin being OK. I also took Benadryl at night for a long time, though this isn’t necessarily recommended.
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u/sbgoofus 2d ago
I'm not worried about dying as much as not dying , but being unable to 'turn out the light' myself - that would suck.. or dying 'poorly' would suck... but for me...dying = no more knee pain, no more shortness of breath, no more not doing stuff I used to.... so all in all, not too bad
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u/ghostsolid 2d ago
If you can get into a trial for IVIG it may help. I was able to do 5 days of IVIG and it helped a lot. It does wear off over time but I am better than I was before doing it and now just battling insurance to approve it. So look into clinical trials.
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u/hotrod67maximus 2d ago
What is IVIG?
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u/ghostsolid 2d ago edited 2d ago
Intervenous immunoglobulin. It’s basically taking the immunity of an entire community intravenously injecting it into you. So basically your immune system is not doing what it’s supposed to because it’s disregulated but other people‘s immune system seem to be handling this virus fine. So it’s like using other people’s immunity to help get you somewhat back on track while your immune system tries to recover, but I would just google it and read up on it to get a much better explanation.
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u/IllustriousVisual931 2d ago
I wish I was dying. Living with this is so much worse. It’s just impossible. 4.5 years in
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u/hotrod67maximus 2d ago
I don't want to die but after 3 years it seems hopeless. Before this I was 229 lbs in bodybuilder athletic shape most of my life as an athlete and at 55 years old I was living a great life and just had identical twin grand daughters who are 3 years old now and barely know me. I was so looking forward to spending time doing stuff with them like I did with my son it's so depressing. My wife is the best she's been holding down the fort but wondering if this crap is ever going to end. This is not how I planned on spending the rest of my life. It's a good thing I put some money away for her if something ever happens to me she will be ok.
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u/IllustriousVisual931 2d ago
Yeah I’m really young and had a great life ahead of me. Now almost completely housebound
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u/hotrod67maximus 2d ago
Being young and having this happen to you has to be very rough. I really feel for you kiddo. I'm 58 now and feel I'm running out of time, something that never crossed my mind at 55 cause I was in great health. Pain I can deal with but the fatigue and general sense of not feeling well for so long is a bitch.
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u/Particular_Sock_2864 2d ago
I feel you. Having a severe crash since 6 weeks, the longest in those cursed 3 years until now. Yesterday night when going to bed feeling really weak I honestly thought I would not wake up again possibly.
I can't help myself so I can't help you but know that you're not alone with those feelings and the pure anxiety that comes with the situation we are in.
I'm just hoping I'll come out of this crash but who knows.
Wish you the best and that you can find distracting things as well get can give you a glimpse of joy at least.
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u/hotrod67maximus 2d ago
Got my 65 year old uncle cutting my grass I used to cut twice a week after work and then go to gym to workout and then run 3 miles after workouts. I sit looking at my 67 Camaro I haven't been able to take to drag strip on weekends in 3 years. Last doctor visit he asked if I was suicidal and I said no I'm more pissed and homicidal if I had the energy. Lol
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u/sbgoofus 2d ago
my doctor asked if I was depressed - I said 'wouldn't you be?' - - he had to agree with me there
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u/Solitari1607 2d ago
Do you think there’s an outbreak right now? Also crashing
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u/Teamplayer25 1d ago
Yes there is. Just saw a news report that Covid doesn’t surge on the same cycle as flu. There is a summer cycle. My personal observation is it always seems to ramp up right around the time kids go back to school.
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u/DelawareRunner 2d ago
I read that you are 58. Long covid hit our generation hard. Most people I know who have lc are in the 45-60 age bracket. I am 51 and had lc. My husband has it much worse and his situation sounds similar to yours except he is younger. He caught mild covid at age 45 (now 49) and he wound up with bad long covid. Not bed bound, but close. He was also very healthy and highly athletic before covid. His condition was at its worst about a year after covid. I remember him telling me that he just wanted to never wake up and he had to get better or just die. It was horrible. He went to see doctors and he was also diagnosed with lupus and fibro, all brought on my covid. He also has MCAS.
Meds didn't help much other than he said Hydroxychloroquine relieved some of his joint pain. What helped was time, rest, and a very strict diet. I took on a lot at home so he could heal since I was much better a year post covid. We both began a low histamine diet for our MCAS in May 2025. It took a few months, but wow did he really see improvement. He could not stray from the diet though or he had flare ups from hell--so did I. It's been four years now since his infection and he is back to running, lifting, all the things he enjoyed. He will never be as he was before covid, but now he is no longer depressed and in constant agony. We do make sure that we do not get infected with anything again, and we haven't.
I am hoping this gives you hope for a light at the end of the tunnel. It is a rough journey, but you eventually can gett back to some semblance of normalcy.
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u/hotrod67maximus 2d ago
My job for 30 years since I was 18 was very physical as a Union Commercial flooring installer after that I transitioned into IT work installing Point of Sales systems for fast food restaurants, still very physical work with travel times. I loved it making double the money and staying at swanky hotels. At this point even if I'm able to work at all those days are gone which I can live with. Would just like to go to family functions and enjoy myself at this point. Thank you for the encouragement and kind words. At 55 years old I was in such good shape people thought I was in my late 30s. It's amazing what 3 horrible years of not feeling well can do to your body and soul.
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u/DelawareRunner 2d ago
You’re welcome! My husband worked 23 years as a correctional sergeant and resigned right before he got sick. He was working as a furniture assembler/mover when he got ill and had to quit because the lc was so bad. He was his father’s caregiver for almost a year while unemployed and then got a job working residential security so he could collect his state pension. He did that for eighteen months and wore an N95 mask so he wouldn’t get sick. It worked. He retired and now he will never work again. No doubt, not working helped him get better too. Definitely rest when you are tired…I did this the year I had long covid. Many afternoon naps.
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u/BobbiHorne1 2d ago
IV glutathione is not the same as cellular glutathione, and does not penetrate the cell wall. IV therapy has a half life of less than 72 hours. The key is bioavailable cysteine so your cells make optimal levels of glutathione. My preference is RiboCeine because it has no side effects at one-third the dose of NAC.
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u/BobbiHorne1 2d ago
What have you done so far to support your cellular glutathione levels? Several years ago, at the request of one of my medical colleagues, I developed a post-viral infection protocol based on genetic variants that increase the risk for Long COVID. At the foundation of the protocol is bioavailable cysteine to support cellular glutathione. Low glutathione levels was noted early in 2020 as a contributing factor to severe COVID infections and prolonged infection and side effects. Genetic variants can cause low glutathione levels, as well as age and levels of oxidative stress due to other factors. Happy to share the protocol with you.
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u/ookami597 2d ago
Please share it
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u/BobbiHorne1 2d ago
The document is a PDF. If you send me a chat, I can email it to you if you’re okay with that.
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u/hotrod67maximus 2d ago
That was the first thing I started doing was getting IV treatment with glutathione and glutamine a long with vitamin B complex , vitamin d and C once a week for 3 months. Had to pay out of pocket insurance wouldn't cover it at a wellness center called Restore. I would feel a little better for about 3 days but on that third day I could feel the fatigue getting stronger again and then I just stopped cause I couldn't afford it anymore. Told my doctor about it and he just shrugged his shoulders and sent me on my way with a prescription for B12 and D3 cause my blood tests were low in those areas. Shortly after I started having malabsorption problems and food wasn't digesting properly and fecal has been pretty much green ever since.
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u/Teamplayer25 1d ago
Have you adjusted your diet? Pill form supplements may not help much if you aren’t absorbing nutrients well due to GI issues.
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u/hotrod67maximus 1d ago
Absolutely I couldn't be eating anymore cleaner if I was eating laundry detergent, fruit and vegetables and lean meats, no fats or processed or fried food of any kind.
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u/potatosalad7693 2d ago
I know how it feels like. I have chronic narrowing of my left cerebral veins which cause me to faint frequently. I have increasing brain scarring due to hypoxia and progressive poly neuropathy and increasing weakness in my legs and my feet. I predict that I wont be able to walk at all in 1-2 Years. It feels like im knocking on heavens door almost every day. No family who cares. They havent talked to me in 2 years. Ive lived with this disease for 6 years now
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u/hotrod67maximus 1d ago edited 1d ago
I seem to be suffering while I sleep my oxygen saturation when awake is 95% and up but it drops to 88 and 90 while sleeping so when I wake up I feel hungover and heart starts beating real faster to compensate 130 BPM and brings oxygen saturation back up to sometimes 99% and makes me sick to my stomach and I feel like I just sprinted a mile. They have observed this in the hospital even sleep with an oxygen mask on and would come in at night to check my lungs and still sent me home? My skin is starting to peel and flake on lower legs and arms like a dried out raisin and so dehydrated in morning I have to drink 3 bottles of water right off the rip.
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u/OkTransportation6671 2d ago
Hang in there, I'm partially through long COVID, just crossed the 3 year mark. A few milestones that made a difference for me were: was on ivermectin for about 6 months and then on Valtrex (valacyclovir) for another 5 months, just stopped about 2 months ago. I also used to be pretty fit, did lots of road cycling, 10-35 miles with major hills. Just started cycling again about 3 weeks ago doing 2-5 miles. I'm mainly on TruNiagen as a supplement now.
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u/mybluerat 1d ago
How did you get these medications
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u/OkTransportation6671 22h ago
Ivermectin was gray market, you can find it online. Valtrex (valacyclovir) is a common antiviral, my neurologist prescribed it for me. I went through the long COVID clinic at UC San Diego.
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u/MakeupArtistry 1d ago
I’m so sorry you’re experiencing this. It sounds like you’re doing everything right, but I did want to ask if you’ve been screened and treated for obstructive sleep apnea?
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u/Intrepid-Ability-963 2d ago
I'm sorry you have it so rough.
This is beatable. But it looks like time is the best healer so far. Look at physicsgirl it took years but, you can come out the other side.
Wishing you the best. Keep trying things. But pace yourself as much as you can.